Unbearable Pain: My Struggle Against the Enigmatic Pain of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The headaches appeared frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often start with intense pain behind one eye that persists up to several hours.
Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.
What connects sufferers is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.
Ancient healing texts propose bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious 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 intense headache occurring and vanishing daily at specific hours”.
Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in treating the condition explain this.
In 1998, scientists released the findings 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 major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.
Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.
But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.
The official guidance need updating to reflect a
