Full-Blown Pain: My Fight With the Puzzling Pain of Cluster Headache Syndrome
It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my one eye. Then came quick jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.
The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.
This condition typically start with severe pain around one eye that persists for three hours.
About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with abrupt, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.
Historical healing texts propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in treating the condition explain this.
In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his symptoms.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has experienced the condition for most 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 misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.
Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.
But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
