Full-Blown Pain: My Fight Against the Enigmatic Suffering of Cluster Headaches
It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the pain eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.
The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense discomfort behind a single eye that lasts for several hours.
About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.
One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated behavior. Support 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 clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.
Still, the inability to organize life around unpredictable pain took its toll. She particularly 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 incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major 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 book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only officially recognised by global headache societies 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 which supplies blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists 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, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.
Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.
But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
