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A psychedelic cluster headache
(Image: Tina Tiller)

SocietyJune 21, 2023

The ‘unremitting’, ‘inescapable’ pain of cluster headaches

A psychedelic cluster headache
(Image: Tina Tiller)

It’s one of the most excruciating conditions imaginable, yet few understand it or even know it exists. So what are cluster headaches, and is there anything that can be done to help those who suffer from them?

The pain was searing. A deep, burning sensation behind my left eye, like a hot needle was being stuck into it. It felt like something was in my head that just couldn’t escape. Weirder still, I was asleep. What at first seemed like a vivid dream soon woke me up, but the pain was still there. A deep, violent pain that was all-consuming. I couldn’t keep still and for more than 30 minutes I writhed as my head felt like it might explode, an intense pressure building in my temple. And then it stopped, almost as suddenly, leaving me feeling deflated and, at 3.30am, even more tired than I should have been. Twelve hours later, almost to the minute, the pain was back. I was sitting at my desk at work trying to focus on whatever was going on in the news that day, but I couldn’t keep still. Somewhat irresponsibly, I drove myself home, scratching and clutching at the left side of my head the whole way.

This was in 2020. And after a few days of similar headaches almost precisely 12 hours apart each time, I realised something wasn’t right. I later learned that these weren’t just ordinary headaches. I didn’t just need to “drink more water”. Nor were they migraines either. I was diagnosed with what are called cluster headaches. Or, euphemistically, and darkly, suicide headaches. You can probably guess why.

The cluster headache conundrum

Cluster headaches – technically an example of a “trigeminal autonomic cephalgia” headache – are an enigma. Fairly rare, they’re said to affect about 0.1% of the population, or about one in every thousand people. They affect more men than women, which sets them aside from more common forms of headache like migraine. There is no “cure”, with treatment instead focused on prevention and pain relief. The “cluster” refers to the headache pattern. Sufferers experience multiple debilitating headaches every day during a cluster period, often accompanied by sudden physical symptoms like a drooping eyelid and a blocked nose. The headaches operate on a cycle, too, typically occurring suddenly at the exact same time – or times – each day.

For me, this means about two headaches every day, one at around 3am and another at 3pm, over a roughly six week period every year. That’s a relatively mild cluster. For others, the cluster period can last for months, often pegged to a particular season, and people can experience as many as eight attacks a day. More rarely, the condition can be chronic, meaning a cluster period lasts consistently for at least 12 months without remission. 

There’s also the question of what causes them in the first place. It’s often easy to pinpoint what triggers an attack for someone who already suffers, commonly alcohol or smoking. But these won’t be what causes the condition in the first place. That’s because while in rare cases cluster headaches can be brought about by severe trauma, in most instances there is no underlying cause. There are some suggestions that it must involve parts of the brain involved in the body clock because the attacks occur in certain seasons of the year and tend to come on at the same time of the day. There are links, therefore, between cluster headaches and sleep apnea – 30 to 80% of patients with cluster headaches also have the sleeping disorder. It’s also believed the condition can be passed down through genetics, though the links are often confusing and not all cluster sufferers will be able to instantly identify a familial connection. 

In short, as neurologist Dr Kiri Brickell tells me, cluster headaches are miserable. Inspired to become a neurologist by Sir Richard Faull (who made the subject “fascinating”), Brickell is an Auckland-based doctor focused on a range of conditions that affect the head. Cluster headaches, she tells me, are the “worst headache ever”, comparing them to an unrelenting ear-worm jingle, one that you can’t seem to get out of your brain. “It is unremitting, it is inescapable. You can’t see your way through it. It makes you restless and it takes over your entire life.” 

Brickell’s words ring very true for me. As she explains, while a migraine or a tension headache will likely make a sufferer want to hide away in a dark, quiet room, cluster headaches cause the opposite reaction. With cluster pain, you cannot lie still. “It’s intense,” says Brickell “It’s 15 minutes to three hours at the same time every night for however long the cluster is.” Migraines, she says, are not that bad.

Cluster headaches are one small part of Brickell’s expertise. As a neurologist, she’s interested in them because they can often be examined through a more holistic lens. Brickell refers to the “biopsychosocial model” of health, meaning there are always other factors – biological, psychological and social – that should be considered when handling treatment. That includes a relationship between behaviour, mood and sleep. They’re sort of an interconnected triangle, and if one aspect is misbehaving then the other two may collapse as well. “It is the patient that has to get themselves well,” Brickell says. “I have to give people tools, and they have to incorporate the changes into their lives.” 

Fellow neurologist Dr Rosamund Hill ended up in the area of headaches after discovering a lack of need for epilepsy doctors when she returned to New Zealand. She’s also fascinated by cluster headaches, partly because they are so rare. But, she says, that rareness presents difficulties when it comes to diagnosis. “Headache is mostly expected to be managed in New Zealand by GPs so unfortunately a lot of people with bad headache don’t get neurology input,” she says. “We don’t really have enough neurologists, so it is difficult.” Her and Brickell represent about half of the most reputable cluster headache specialists in the country. They’re often recommended by sufferers seeking help in a local support Facebook group, which is how I first stumbled upon their names.

The first hurdle in helping cluster headache sufferers is identifying that they’re cluster headache sufferers. “People don’t realise that there are a lot of different sorts of headache. The ordinary kind of headache, when you’ve spent a lot of time looking at a screen and haven’t had enough to eat or drink, that’s just a tension type of headache that will go away,” says Hill. “Yeah, that’s a headache, but it’s not in the same ballpark as people who are confined to bed with light and noise sensitivity and nausea with a migraine – or people who are experiencing excruciating pain with cluster headache.”

Brickell agrees: “It’s like all of us. We don’t appreciate the subtleties of different diagnoses until we are directly affected. Getting an accurate diagnosis is helpful for anything because diagnosis is the first treatment pathway you go down. I don’t think people understand how terrible a cluster is.” Brickell herself says that, despite being a migraine sufferer, not even she can comprehend what it would be like to have a cluster attack.

Brain freeze

Craig Stewart experienced his first cluster headache in 2013. In fact, he can pinpoint the exact date: November 7. “I remember seeing my doctor that year and they said ‘Your mum just died… you’re suffering from stress’. I was like, ‘It’s not stress’.” A decade on, he’s an online content creator dedicated to exploring the world of cluster headaches and possible treatments. 

For the five months after his first cluster attack, Stewart suffered from multiple debilitating headaches each and every day. He still had no idea what they were. For six months he was granted a reprieve from his brain but then, on November 7, 2014, exactly 12 months to the day after his first bout of pain, the headaches returned. He was at an Elton John concert in Wellington. 

“The first few years were the hardest,” he says. Stewart would experience back-to-back attacks every single night, preventing him from sleeping properly. “I didn’t know what they were so I was medicating with heavy painkillers like codeine and morphine. By 4.30am, I was literally swigging whiskey straight from the bottle to get some shut eye before facing another day.” 

Stewart, like many cluster headache sufferers, found it hard to describe to other people exactly what the pain was like. I ask him how he’d explain it to an outsider. “Imagine being on a hot beach and you’ve been sunbathing all morning and it’s now midday and you see that guy push the shaved ice cart. You grab the slushy and you bring it up to your lips and down it and 30 seconds later, brain freeze. You grip your head in that pain and you know that in 20 seconds it’s going to subside. But just picture sitting with that level of brain freeze pain not for half a minute, not for a minute, but up to an hour and a half to two hours at a time. And try repeating that three or four times a day and dealing with it for not weeks on end, but months on end. You get an idea of how helpless you feel.”

In early 2015, after finding a lack of support from his doctor, Stewart paid to see a neurologist and was diagnosed with cluster headaches. Initially, he struggled to find a treatment that worked. And as the next cluster started in November that year, Stewart was at breaking point. “I said to my wife I just can’t do it, I’m just not tough enough. I was breaking down everyday among the attacks. I was thinking about suicide, I’d started asking where I could get a gun.” It’s for this reason, the intense and sudden severity of pain, that cluster headaches are commonly referred to as suicide headaches. 

‘A headache is not a headache and is not a headache’

While the cause of cluster headache remains a mystery, treatment can often be quite straightforward. But like any rare condition, there’s a bit of trial and error. After my diagnosis, I was prescribed a medication by my GP that I’ve since learned isn’t typical for treating cluster headaches. It works, for the most part, but as Brickell says: everybody is different. “You need to find the treatment that suits the individual,” she says. “There are some treatments which are diagnostic, so high flow 100% oxygen through a non-rebreather mask is an ideal treatment. The problem is accessing it.” That’s often a first line defence against cluster headaches, but is no longer funded and can also be burdensome for the sufferer as an oxygen tank is required. Another acute treatment is a self-administered injection of a drug called Sumaptriptan, part of a family of “triptan” medications that can help prevent headaches, which is commonly prescribed and accessible. Preventative treatments are also available, with Verapamil – a calcium blocker traditionally used for high blood pressure – the most widely offered. 

But anyone who is struggling to control their headache should seek specialist care, Brickell says, because it means it is beyond the level that can be controlled in primary care. “Cluster headaches tend to recur so it is important to find the treatment recipe that is effective for the individual,” she adds, reiterating the importance of a proper diagnosis. “It comes down to people thinking a headache is a headache is a headache. And a headache is not a headache and is not a headache. So the first barrier is getting the diagnosis, once you get the diagnosis you can go down the pathway.” 

The internet is littered with alternative and often unexplainable options that have proven effective for some sufferers. Early on in my diagnosis, I was told that sculling a freezing cold can of Red Bull at the onset of a cluster headache can instantly remove the pain. Mysteriously, it worked the first time – though it’s not something you’d be prescribed by an expert.

There’s also anecdotal evidence (albeit limited) that medicinal cannabis or even psychedelic drugs like psilocybin – magic mushrooms – can provide relief for cluster headache sufferers, though Hill tells me it’s not something she would promote. “As a neurologist I don’t recommend it, but if patients approach me and say they would like to try medicinal cannabis for a pain problem I’m not adverse to them trying it. But I do say there is no scientific evidence I can give you.” It can, she adds, be useful for people suffering from sleep deprivation and anxiety as a result of their cluster headaches which could in turn help relieve some of the pain. “There’s certainly no strong evidence that it’s effective.”

Others have turned to alternative treatments like physiotherapy. If you Google “cluster headaches New Zealand”, as I did when I was first diagnosed, two of the top links are for specific clinics: the Headache Clinic and the Migraine Clinic. Both claim to cure a range of headache conditions, including clusters, without using pharmaceutical methods. They promote something called the Watson method, which attempts to assess the role of the neck in a range of headache conditions.

Nicky Collins, clinical director at the New Lynn branch of the Migraine Clinic, says she’s been able to successfully treat cluster headache patients within six treatment sessions. “We’ve found a similar pattern of dysfunction in the upper cervical spine we believe to be contributing to brain stem sensitisation,” says Collins. “We look for reproduction and resolution of familiar head pain during our assessment to ‘rule in’ or ‘rule out’ brain stem sensitisation by the cervical afferent nerves, the nerves relaying information from muscles, ligaments, discs and joints in the upper neck to the brainstem.” This treatment would often be conducted after someone had been formally diagnosed by a neurologist, Collins says. 

While traditional medical treatments are the most common option for patients, Helen Tufui, the founder of the Headache Clinic, says her work also looks at what could be triggering the headache in the first place. “So with cluster headache, rather than looking at it from ‘what medication can we throw at it, or what intervention’… I think it’s less commonly approached from a ‘what else could be sensitising the brain stem [perspective]’. It’s not as commonly looked at from that point of view.” Like Collins, Tufui claims a high success rate: over 90% of patients leave with a “significant improvement” in their condition, she says. “In cluster headache, it’s no different.”

There is disagreement among the scientific community as to the validity of these treatments, acknowledges Tufui, but some GPs are aware of the treatment she provides. “They are extremely proactive in referring patients. However there are a number of GPs who just don’t see cluster headache on a regular basis,” she says. “As that research catches up in terms of the influence that the cervical spine has on headache, migraine and cluster headaches, then I’m hopeful that in the future it will be commonly looked at, that people will get specialised assessment of the upper cervical spine to rule in or rule out its contribution to their symptoms.”

But Hill is unconvinced. In her opinion it’s a “waste of time” and not something she’d ever recommend to a patient. “I’ve never ever been aware of physio being a helpful thing for cluster headache. There are some clinics in New Zealand who are targeting patients with headache and migraine, but their techniques as far as I’m aware have no evidence that they are more effective than other physio techniques,” she said. “There isn’t anything magic about what they do and it certainly wouldn’t be anything that I as a neurologist would refer a cluster headache patient to.”

Stewart says he found relief from yet another avenue. He takes large quantities of vitamin D3 (which he was prompted to investigate after speaking with a neurologist) and now promotes it on his personal YouTube channel where he speaks to experts and fellow sufferers. “I started taking 50,000 international unit capsules a day and on day eight, the [headaches] stopped.” For context, pharmacies here in New Zealand only sell 1,000 international unit capsules, meaning Stewart would be talking 50 of these a day. “I fell to my knees and I cried and I hugged my wife, I was in a state of disbelief.” After a brief headache relapse, he’s upped that dose even further and says it’s continuing to work for him.

While there is a lack of literature about this particular approach, and bearing in mind that not every cluster case is the same, research is under way and a 2014 survey found “a possible causal relationship between a vitamin D3 insufficiency/deficiency and cluster headache”. Many people have an initial prejudice against this sort of method, says Stewart. “Like ‘It’s a fucking vitamin, it’s an aisle in the supermarket where you waste your money’. And that was precisely my point of view prior to trying the regimen and going down that rabbit hole.” 

Earlier this year, he wrote a submission to parliament’s health select committee raising concerns about the potential implications of the Therapeutics Products Bill, suggesting it may prevent him from accessing the supplements he needs to keep his cluster headaches at bay. “My opposition to the bill stems from the perspective of those, including myself, who have used high dose vitamin D3 and cofactors to prevent and control cluster headaches, the most excruciatingly painful condition known to mankind, as well as those who believe in the safety and efficacy of vitamin D3 supplementation,” wrote Stewart. Amendments to the proposed law were announced last week, allowing people to import medication with safeguards in place (though some want the changes to go further).

‘Nobody needs to suffer’

Those who I spoke to unanimously agree there needs to be greater awareness of cluster headaches, along with support for sufferers. Stewart says the more people that are aware, the more compassion will be offered to those who have been diagnosed. Earlier this year, he sat down with a manager at his then-workplace, informing them about his cluster headaches and that he might not always be his normal self at work. “Two days later, I’d been up all night really struggling, I went into the office wearing a T-shirt with a blazer and I got a text that night saying ‘never come to the office in that kind of condition ever again’. I’d just spent half an hour explaining that I’m dealing with the most painful medical condition known to mankind. What happened to a bit of compassion and understanding?” 

Brickell would like to see botox funded as a headache treatment, with emerging evidence it can help prevent the onset of pain. She also wants funding for a range of medications called “Gepants”, new migraine abortive medications that have been specifically developed to treat headaches. Brickell says raising awareness of cluster headaches, and providing more options to sufferers, will mean patients can work more, socialise more and generally be more productive. “If someone has the ability to manage their migraine such that it no longer interferes with their life, how is that a bad thing?” Hill agrees: “Lots of people get a bit of headache, but it’s not too bad and they take a couple of Panadol and it goes away. But they don’t appreciate that for some people it’s really bad – and then there’s a whole other level, which is cluster headache.”

There are movements in the medical field that could see additional drugs funded, but it’s not a quick process. Dr Fiona Imlach, co-founder of the Migraine Foundation NZ, which was set up to help sufferers find support, agrees there are issues with access to medicines in New Zealand. “There are a lot of new medications which are so exciting for us because they are specifically developed to target the protein in the brand that triggers migraine attacks. We’ve only got two of them here and none of them are funded,” she says. “Pharmac is so, so slow. It’s frustrating.”

Medsafe confirmed that it was looking at approving a drug called Qulipta following an application from pharmaceutical company Allergan NZ. Pharmac also said it had received two funding applications for galcanezumab – a medication branded as Emgality – for episodic migraines and prevention of chronic migraines, along with an application for another called erenumab for the prophylactic treatment of migraines. But, says Pharmac’s acting director of pharmaceuticals Geraldine MacGibbon, these applications do not seek funding for cluster headaches. “However we will be sure to seek advice on this indication from our clinical advisors”.

MacGibbon adds: “We are in the initial stages of reviewing these funding applications and plan to seek clinical advice from our Neurological Advisory Committee at its next meeting. Following this our team will consider the applications through our usual funding process, including assessing the application against our factors for consideration to help us to understand the impact funding of the medicines could have.”

As it stands, cluster headaches remain a largely unknown and mysterious condition. They cause excruciating and unavoidable pain. But while sufferers may struggle to find the treatment that works, it’s often out there if people are properly assessed – and more options will continue to be made available. That’s the final message that Brickell leaves me with; that while it’s hard, when you’re in the middle of a cluster, to realise there’s a way out, there often is. 

“Can you please convey that there is hope,” she says to me. “Nobody needs to suffer.”

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