Full-Blown Suffering: My Struggle With the Puzzling Pain of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.
The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often begin with severe discomfort around a single eye that persists up to several hours.
Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.
Historical healing records propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.
The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis 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 sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists 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 reassuring advisor talked me through oxygen treatment and medication until the episode passed.
Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.
But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidelines need updating to reflect a
