A National Migraine Centre Heads Up Podcast transcript
Heads Up is the award-winning podcast series on all things headache, brought to you by the National Migraine Centre. Produced by leading headache doctors, it’s the trusted source of information and support for all those affected by migraine and headache.
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Transcript
00:00:00
Welcome to the Heads up podcast, brought to you by the National Migraine Centre, the only UK charity treating headache and migraine. Visit our website to book your appointment with a world-class headache doctor, wherever you are in the UK. There is no need for a referral. You can refer yourself. Our headache specialist doctors are looking forward to helping you soon.
00:00:21 Becky
My name is Becky. I’m thirty-eight and I live with a condition called cluster headache. I was officially diagnosed in 2019. However, I’ve been having cluster headaches for much longer than that.
Diagnosis can often be tricky as there are so many different headache disorders and often migraine can be misdiagnosed. I have chronic migraine and episodic cluster headache and they are incredibly different. In fact, many people living with cluster headache really dislike the name as headache doesn’t even come close to describing the pain felt during a cluster attack. I think a lot of people, when they hear the word headache, think well, surely it’s just a headache. How bad could it possibly be?
How wrong they are.
Cluster attacks happen very quickly. There is rarely any warning before the pain strikes. The only way I can think to describe the pain is if you try to imagine how it would feel to have someone hammering a red-hot poker through one of your eyes. With each hit of the hammer, it gets deeper and more intense. And when it reaches the back of your head, there’s someone there smashing it back in with a heavy mallet. And as if that’s not bad enough, it also feels like there is a second red-hot poker being forced through the top of your head and out through the same eye.
The pain is excruciating, unbearable, and torturous. You do absolutely anything to make it stop, and despite being here before and surviving every attack, each new attack feels scary. And like this time the pain might never end.
During an attack, my body feels panicky. The anxiety kicks in, I become restless and tearful. My temperature and my heart rate increase and I can’t think rationally. I just want the pain to end.
With the combination of medication and oxygen after twenty-thirty minutes, the pain eventually subsides. I am then left feeling battered, bruised and depleted of energy, both mentally and physically. But instead of relaxing and trusting that it is over, you are constantly on edge waiting for the next attack to arrive.
Cluster headache is known as the beast. It retreats, but it is never far from attacking again. It is like sharing your room with a monster that periodically mauls you, then crawls back under the bed. Even when it’s not attacking you, it is still there. Cluster headache is known as one of the most painful conditions known to man and is often described as worse than childbirth. It really is like psychological torture.
My own diagnosis came about after a trip to the A&E department at my local hospital. I was in a severe amount of pain and nothing seemed to be helping. After waiting for quite a long time, the doctor I saw was really lovely, he said, I’m going to try something. He put me in a dark, quiet room and administered high-flow oxygen for twenty minutes. As I was lying there, the pain began to subside. I couldn’t quite believe that the oxygen was having such an effect. I think I may have even hugged the doctor as the relief was so incredible.
I then spoke with my own GP, who spoke to neurology on my behalf, and I was prescribed home oxygen. I believe it was my pain’s response to oxygen that eventually, after years of suffering, finally led to the official diagnosis from my neurologist.
I consider myself really lucky that I have episodic cluster headaches, meaning that I don’t have them constantly. My cluster bouts usually occur twice a year. During these bouts I can have between six to eight attacks a day. This can last for several weeks.
As you can imagine, that obviously has a massive effect on myself and also on my family. My husband and children have to see me in pain and being upset. I hate that they have to see me like this. It can be hard to make plans. Leaving the house can be difficult during bouts, as that’s where my oxygen is, and also leaving the house adds the fear of being judged if I have an attack in public. It’s not a very well-known condition and I think people would give me some funny looks if they saw me out and about during a cluster attack.
My children have had to see me suffer for many years and they’re a bit more used to it now. They often bring me blankets and teddies and tissues to wipe away my tears. It’s almost like during an attack I become the child and they are the ones looking after me. I can only hope that this helps to develop their caring natures and empathy for others.
During a cluster bout, my mood can become quite low. I think that’s quite common for cluster sufferers. You can’t experience this amount of pain knowing it will happen repeatedly without it affecting how you feel.
Cluster headaches can be incredibly isolating. It’s really hard to explain the intensity and anxiety to family and friends who have never experienced it. They try their best to understand, but unfortunately you don’t get it until you get it and I wouldn’t wish it upon anyone.
Through my own research of cluster headaches, I have found support groups, mainly through Facebook, and they have become a really good place to discuss clusters and their effects. These groups are full of people who know exactly how it feels and understand. They can be a place to vent, to share stories and to access further resources.
It was through these groups that I became aware of the Organisation for the Understanding of Cluster Headache, also known as OUCH. OUCH are trying to raise awareness of cluster headache and also offer support and information on how you can best be treated and how you should be treated.
If I was speaking to somebody recently diagnosed with cluster headache, I think I would say that it really is a bit rubbish, but you don’t need to suffer in silence. Try to explain the best you can to those around you. Let them know how they can best support you. Access the OUCH website and know what the doctor should be doing to help you. I think it is really important to have a support network around you as well.
And by speaking up and informing friends, family, workplaces and colleagues, you may may feel less alone. It is frustrating that it is so unknown and that the name suggests a headache that can be simply treated by drinking more water or taking some paracetamol. Unfortunately, it is a much more complex and debilitating condition and the best way to raise awareness of it is to reach out to others and to share our stories.
This transcript is based on a past episode of the Heads Up podcast and reflects information available at the time of broadcast – some facts may have changed or new treatments become available since.
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