‘More Painful Than Childbirth’: Suffering from Cluster Headaches

By Rebecca Deakin

A cluster headache is excruciating and very rare; it causes horrendous pain to one side of your head, usually felt around your eye. This horrible condition has the same number of estimated sufferers as MS in the UK, but the condition is widely unknown. This can make it difficult for sufferers to get diagnosed and receive help.

These headaches happen in bouts that can last weeks – even months. They tend to repeat around the same times each day and at similar times of the year. Attacks usually last from around fifteen minutes to three hours, and a sufferer can experience anywhere from one to eight attacks a day. The condition can be chronic or episodic.

To put the pain into perspective, it has been nicknamed the suicide headache. There have even been reports that some women have described them as more painful than childbirth. But yet it is largely unheard of by many, and their cause isn’t yet fully known.

I myself went undiagnosed for a long time. I had previously suffered from anaemia that had caused migraines, but when my iron levels became stable doctors couldn’t understand how I was still getting headaches. I now know that I was suffering from a debilitating cluster headache. 

The excruciating pain began to take over my life. I was having a number of attacks in a day, which in itself was exhausting, but what I also struggled with was the impact on my mental health. Trying to explain to people that I felt unwell yet again and the suddenness of an attack was terrible, and the pain would heighten very fast. 

After suffering for years, some of the advice people would repeatedly give me was ‘take a lie down and have a paracetamol’ or ‘don’t eat chocolate or cheese’, but paracetamol or any over the counter painkiller for that matter never even made a dent in the pain. I would often pace up and down and would be very agitated. The advice I was repeatedly getting made me feel like I wanted to bang my head against the wall; I wasn’t being listened to. But how could they understand when even I didn’t understand at the time what I was going through? 

After an attack would subside, I would often be left in tears, thinking I can’t do this again; I don’t have the strength anymore to keep doing this. When a bout would finish – in what is often called a remission period – I would overthink a lot. Things like: am I overdramatising this? But then the next attack would hit with a vengeance and shake me to the core once more.

This cycle left me feeling extremely tired and very lonely. It was interrupting my life, especially my social life. My anxiety began to grow fast as I feared having an attack in public and just wanted to be left alone and hide away. The attacks themselves, whilst undiagnosed, I can only describe as being like a horror movie. You know, when a demon comes and takes possession of you and there is nothing you can do about it until that demon decides to leave you? 

I feel horrendous pain on one side of my head, usually centred around my eye, which becomes very watery and is often accompanied by a blocked nostril. I can sometimes feel clammy and I’m always restless and agitated during an attack. I would take over the counter painkillers, but they never helped: the pain would heighten too fast. I would often just pace back and forth for the entirety of the attack, sometimes even screaming out in pain, and the attacks were bad enough that they would even awaken me from a deep sleep.

Whilst watching an episode of This Morning that was talking about different types of headaches, I realised that my symptoms matched those of the dreaded cluster. In 2020, my neurologist confirmed it. He quickly put me on sumatriptan injections, which I administer myself. This has been a game-changer for me, to actually have something that helps with the pain. 

I’m also looking into other treatments, such as oxygen, and the door, it seems, to a better and less painful life has opened. He advised me to start following the charity OUCH UK, and it’s really helped me to read other people’s experiences through this charity and realise that I am far from being alone with my pain. 

The day I was diagnosed will remain one of the happiest of my life – not because I suffer from a neurological condition, but because, just as it is in a horror movie, when you can name the demon, you can begin to take back control.