Excruciating Pain: My Fight With the Mysterious Pain of Cluster Headaches
It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Multiple 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 unrelenting.
The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe pain behind one eye that persists for several hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.
What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang 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 causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.
Still, the inability to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.
Ancient medical texts propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.
In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.
National guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.
But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with occasional attacks are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
