Unbearable Pain: My Battle Against the Mysterious Pain of Cluster Headaches
It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.
The attacks returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition often begin with severe pain behind one eye that persists for three hours.
About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Support 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 office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially disliked 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 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 recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.
Historical medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.
In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough 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? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.
Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.
But leading specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The national guidance need revising to reflect a
