Cycling 250 Miles for OUCH(UK)

“One of the most painful conditions known to man” For something described like this, you would imagine there would be a whole world of awareness about it. Unfortunately, that’s not the case. Cluster headaches are extremely rare, affecting around only 0.2% of the population. They’re even more rare in women, with a ratio of approx. 5:1 male to female. And even more rare still, chronic cluster headaches. They most commonly occur episodically, with periods of weeks/months or even years of remission between cycles. Chronic cluster headache happens for months or years with no periods of remission, and approx. 1-8 attacks per day. I currently have around 6 per day, every day, since around 2025. I’ve had migraines for most of my life. These began when I was a child and were classic migraines with aura – visual disturbances (brightly coloured zig zags) in one eye, followed by severe throbbing pain in my temple on the opposite side. They usually occurred around the time of my period so had a hormonal aetiology. However, these suddenly changed in around 2018 and I haven’t really had a migraine since.

I was working in an Intensive Psychiatric Care Unit when I suddenly developed the most agonising pain I had ever experienced, concentrated around my left eye. My left eye became droopy and started watering, my nose was runny, and the pain was so severe that I had to be taken off the ward. This eventually subsided after around an hour.

The pain around that temple, however, never really went away.

For years afterwards, I was treated for chronic migraine, with the thought that maybe my episodic hormonal migraines had changed to chronic migraines. I had MRI scans, was appointed a neurologist, and tried medication after medication — topiramate, nortriptyline, amitriptyline, candesartan, propranolol, verapamil, atogepant and indomethacin, alongside greater occipital nerve blocks and various other treatments, none to any effect. The pain had changed from the kind of pain that could be relieved by lying down in a dark room, to a kind of pain unlike anything I’ve ever experienced in my life, a pain that you cannot lie down when you’re experiencing, a pain where nothing else in the universe exists beyond all-consuming agony.

I tried around a dozen different medications over the next few years, and none of them really had any effect other than costing me years of my life and health, causing extreme drowsiness, sedation, dizziness, nausea, problems sleeping, loss of appetite and weight, mood changes and difficulty functioning properly. Topiramate caused me difficulties finding words, memory problems, and loss of feeling in my face, hands and feet.

By January 2025, at the beginning of the final year of my master’s degree in Mental Health Nursing, the pain and the medication issues had reached a crisis point. The pain was there every single day, for much of the day. It would wake me up during the night. At its worst, the attacks would become so overwhelming that I would rock backwards and forwards, cry, shake, sweat, pace, hit my own head, and genuinely have suicidal thoughts because the pain was so unbearable.

As I said earlier, cluster headache is sometimes referred to as “suicide headache”, and I can genuinely see why. When the attack peaks at its worst, there seems to be no way of escaping it and it becomes completely all-consuming. It is characterised by pain often centred around one eye and accompanied by symptoms such as a watering or drooping eye, a blocked or runny nose and extreme restlessness, sweating, distress, and agitation. Attacks can last for hours and can occur repeatedly, every single day for weeks, months or years in my case. It is legally recognised as a disability under the Equality Act 2010, yet it is invisible.

The pain is genuinely the worst pain I have ever experienced. I have given birth twice, and the level of pain during a cluster headache attack at its peak far surpasses both labour and childbirth, and far surpasses the pain of broken bones, or any other form of pain I have ever experienced in my life. It is the worst physical pain I have ever felt, and I don’t feel that words do it justice.

During the worst period of this beginning in around January 2025, I was completing the final year of my master's degree. At the time, I was living in Wick and travelling around 250 miles to Edinburgh for my clinical placements. I made that journey with this pain, I turned up to placements, cared for others, tried to prioritise my clinical training and proficiencies that I needed signed off, and went back to my hotel room exhausted. I completed my thesis and achieved one of the best academic marks I’ve ever achieved in 7 years at university. That thesis is now being prepared for publication.

I completed my management placement in March 2026. And in April, I received my registration with the NMC and found out that I had achieved an overall Distinction in my master's degree. I am incredibly proud of that achievement, of course. But there is a big part of me that feels deeply sad and slightly resentful that I had to overcome such enormous feats to achieve these while living in constant pain that others couldn’t see. There are no physical outward signs of disability, and people naturally associate headaches with the kind that everyone experiences from time to time. They cannot see the nights spent awake in pain. They cannot see the tears, the exhaustion, the days when I wondered how I was going to make it through another attack, or how much medication I was taking just to try to function. They cannot see how much of my social life disappeared because I simply could not predict how I was going to feel, or the anxiety of not knowing when an attack would reach a peak of unbearable agony.

They cannot see the amount of my life that was gradually being consumed by pain.

In March, after finishing my management placement, I relocated to Edinburgh to begin my career, and with this I switched neurological providers and was referred to the Department of Clinical Neurosciences, where I saw a new neurologist specialising in headache disorders. On 24 July 2026, after years of symptoms, investigations, medications and being treated for chronic migraine, I was finally diagnosed with chronic cluster headache.

For the first time, the symptoms I had been experiencing finally had a name, and a completely different treatment pathway to migraines. The neurologist made me feel understood, he told me that cluster headache is understood to be one of the most painful conditions known to medicine, and he told me how sorry he was for the years of suffering I’d been through. There was such an immense feeling of relief and appreciation for this man who specialises in diagnosing and treating the condition I had been experiencing for so many years.

The Organisation for the Understanding of Cluster Headache (OUCH UK) estimates that this condition affects up to around 0.2% of the population. Unlike episodic cluster headache, where people can have periods of remission lasting months or even years, chronic cluster headache can involve constant attacks without meaningful periods of remission.

There is currently no cure.

There are treatments that can help manage the condition, however, and I have now been prescribed high-flow oxygen and sumatriptan 3mg/0.5ml injections to try to abort acute attacks, alongside a monoclonal antibody as preventative treatment. For the first time in years, I have some hope that the pain might become more manageable, and now that I know what it is, I am able to begin experimenting with things that help me manage the severity and frequency of attacks. But receiving a diagnosis has also left me thinking about how many years I have lost to this illness. Years of pain, years of being misunderstood, years of being treated for the wrong condition, years where something as simple as making plans, going out socially, sleeping through the night or getting through a normal working day could feel impossible, and years of taking endless different medications with no relief, yet all the horrible side effects.

And as rare as it is, I know that I am not the only person experiencing this. This thought alone is distressing.

That is why I want to raise money for others who are suffering. OUCH UK is the UK's dedicated charity for people living with cluster headache. It was established to increase awareness and understanding of this fairly unheard-of condition, while providing support and guidance to sufferers and their families. The organisation also works with healthcare professionals, supports research, provides information and advocacy, and gives people living with cluster headache something that can be incredibly difficult to find - other people who actually understand what they are going through.

Because one of the hardest things about an invisible illness is that people cannot see it. Someone can look completely fine while experiencing some of the worst pain imaginable. And because so few people have heard of cluster headache, sufferers can spend years being misdiagnosed, misunderstood or simply trying to cope alone. I am very fortunate to have a partner who has been incredibly supportive throughout this, who has seen me at my worst, and who feels so much empathy for how much pain he can see I am experiencing at the peak of attacks. But it is an incredibly lonely and isolating illness, and not everybody is as fortunate as I am to have that support. OUCH UK is trying to change that. I want to help change it too. I want people to know that cluster headache is not “just a headache”. I want people to understand why someone experiencing an attack may pace, rock, cry, sweat or become desperately agitated and even suicidal.

I want people to understand why someone can be completely unable to function one moment and appear relatively well afterwards. I want people – including healthcare professionals and loved ones who support someone with this condition - to recognise the symptoms and understand how important an accurate diagnosis can be. Most importantly, I want people suffering with this condition to know that they are not alone.

So, I am planning to take on a fundraising challenge for OUCH UK - something that will push me physically, but in a way that only represents just a tiny fraction of the endurance that living with chronic cluster headache has demanded from me, and from many others. I am taking on a cycling challenge of 250 miles, over 25 days, at 10 miles a day. I feel this is even more special to me as it represents the distance that I travelled by trains/my car to attend clinical placements, while experiencing truly some of the worst pain of my life. I am hoping for a target of £2,500 for OUCH, represented by £10 per every mile cycled. I will link my Strava account to this fundraising page, to show progress of miles cycled.

I cannot get back the nights I spent awake, the plans I cancelled, the time I lost or the moments when the pain made life feel truly impossible. But I can use what I have been through for something positive – I can speak about it, I can raise awareness, and I can raise money for an organisation that is working to make sure that the next person who develops those terrifying, agonising attacks does not have to spend years wondering what is happening to them.

I have spent years fighting through pain that I did not understand. Now that I finally have a name for it, I want to fight for something else - awareness, understanding, better diagnosis, better treatment and, ultimately, a cure if that could ever become possible. It currently takes on average of 5-10 years for someone to receive a diagnosis, and I'd very much like to be a part of changing that.

For everyone living with cluster headache, I want you to know that you are not alone, and that you deserve the correct diagnosis and treatment without having to suffer for years waiting for these. Any donation, no matter how small, will be so gratefully received. Thank you.