Unbearable Suffering: My Struggle With the Mysterious Pain of Cluster Headaches
It began on a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by quick stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.
The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches often begin with intense pain behind one eye that lasts up to several hours.
About one in 1,000 people are affected by the condition, and males are more often diagnosed. Attacks usually start with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.
What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical 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.
Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.
Historical healing records suggest bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.
The disorder were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.
In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack passed.
National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.
But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
