Excruciating Agony: My Struggle Against the Mysterious Pain of Cluster Headaches
It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.
The attacks returned frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with intense discomfort behind a single eye that persists for three hours.
About one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks typically start with sudden, severe pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.
What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Still, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable 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 liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.
Historical medical texts suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading specialists in treating the condition explain this.
In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.
National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The national guidelines need revising to reflect a
