The worst pain I have ever felt…10/10

Hidden conditions are frustrating… you have to tell someone, including the doctor how you are feeling and what is going on. I wish there was a magic devise like a scanner, or a blood test that would explain what is going on in my body.

Pain is the main symptom of Cluster headaches… reportedly it is the worst pain condition known to man, for those who have experienced both childbirth and cluster headaches they say that CH is more painful. I’ve watched ‘one born every minute’ everyone copes with the pain of childbirth in a very different way! I’ve also seen videos of people going through a CH attack, including myself and I can say that we also cope differently too.

I’m very quiet…I rock, kick out, bang my head with my fists, slap my face, push my head against cold hard surfaces. I hate to be seen like it… very few people have and will see it.

But that experience has to be qualified and quantified when I see my doctor. He asks the usual questions? How much does it hurt on a scale of 1-10, where does it hurt exactly? What else is happening at the time? How long does it hurt for? How often am I in pain?

I understand that without this information my consultant doesn’t know a) what’s wrong with me b) How to treat me

But what I really want to say is…IT JUST HURTS! Like no pain you would ever know! It just hurts in my head and it lasts for what seems like forever. When you are in that much pain you don’t stop to analyse it. In fact you do the exact opposite; you have to focus on anything but the pain. I have developed very good coping strategies that involve very much ignoring the pain the best I can.

I often hear and see friends talk about being in pain with toothache or a twisted ankle and I’m sure would describe their pain as a 10/10. I’m not saying that they are not experiencing pain that is the worst ever but surely it wouldn’t be a 10/10 to a cluster headache suffer who experiences ‘the worst pain known to man’ on a daily basis.

I broke my foot last year and when the DR in A&E asked me on a scale of 1-10 how much it hurt…and it did hurt!... I said a 4-5. He was shocked until I explained that I am a CH sufferer.

Pain is so objective… it’s based on your own tolerance, your own pain experience, your coping strategies. I hate describing my pain… obviously I want to have accurate diagnoses and best possible treatment but I genuinely think I would report the same pain differently from one day to another depending on factors such as how much sleep I have had, who is with me and how many attacks I have already been through that day.

What if I am not consistent when reporting my pain? I am sure there is no consistency across the population of cluster headache sufferers! What one of us describes as a 9 another may describe as a 5.  This is a real challenge for the doctors…it also is a challenge for me… I have described the pain the best I can and as a result have been diagnosed with cluster headaches; paroxysmal hemicrania; and, hemicrania continua. Of course I trust my consultant’s diagnostic skills but what if I have misled him and may have something different or something else? I don’t know if I report the level of pain accurately, maybe there are other treatments that would be more appropriate or more effective.

So much of the diagnostics are left to me… there are no blood tests or scans of my dream scenario. All the therapeutic decisions are made based on my version of events, which is a lot of pressure! I am lucky that I know whatever rubbish falls out of my mouth will be interpreted by one of the leading and best headache specialists. What if the person you are seeing doesn’t know one headache disorders unique presentation from another? What if you haven’t got the ability to communicate?

How do you communicate this pain to a doctor in A&E, a doctor who sees patients with traumatic injuries every day who of course say their pain is 10/10… which makes sense… their leg is broken and the bone is popping out.  Then their next patient has a ‘headache’ and is also saying their pain is 10/10.

As a psychologist I developed scales and measures for things like, quality of life, family functioning and locus of control. I know how a standardised pain scale, such as the KIP scale, is both useful and practical.  But does it really tell you anything? Is it not more of an indication of your perception of pain as opposed to a measure of actual pain? But then surely pain can only be measured as we perceive and experience it.

I think my perception of my pain had evolved over time having had 33 years of pain experience especially the last 8 as a chronic cluster headache sufferer. It depends on my mood; my sleep state; my location; my experience of being pain free (when you are pain free and pain strikes again…for some reason the pain is worse!)

My reporting of my pain is affected by how desperate I am, how much ‘pain free’ time I have had to reflect on the pain I am having.  My answer of “I’m fine’ or ‘I’ve been ok” is now met with a look of concern by my consultant as this normally means I am anything but fine or ok.  But who wants to give in and concede that the beast has beaten them… not me!

Pain… it is our curse… it is hard to describe what it feels like; impossible to measure; and apparently impossible to get rid of!!!

More knowledge is needed within both the general and medical population, and more research is needed into this horrific and often ‘all consuming’ condition. In the mean time we do the best we can to explain the pain we are feeling in order to receive the best treatment and advice to try and manage our pain, ultimately striving for a pain free day!