Unbearable Pain: My Struggle Against the Mysterious Pain of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.
The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort behind one eye that persists for three hours.
Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.
What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.
Ancient healing records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.
It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
The disorder were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in treating the condition note this.
In 1998, scientists 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 prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.
Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short cycles with infrequent episodes are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
