What are Cluster Headaches?

How many people can say they know the answer to this? I have had such negative experiences in my illness journey because people don’t know what cluster headaches are.  I don’t expect people to know every illness and ours in a rare one with only 1 in 1000 people suffering from Cluster headaches and only 10% of those suffer chronically like I do.  What I don’t like is when people guess what cluster headaches are.  People hear the word headache and make the rest up!

This isn’t just strangers, its friends and family; colleagues and employers; but scariest of all its medical professionals.

Again, medical professionals can’t be expected to have an in depth knowledge of all illnesses and treatments but they should know what questions to ask, more importantly they should have empathy and respect.

Don’t get me wrong; a lot do! I have had two amazing GPs practices in the last few years that have always supported me in my fight. I wrote a post recently about a trip to A&E where they were unaware of Cluster headaches but asked me the right questions to help them understand it.

But this week I had a negative experience which has spurred me into action. I was asked to give a 111 nurse (for those of you outside of the UK, this is the non emergency phone line you call for advice when 999 (911) is not appropriate) my relevant medical history. I said ‘I have chronic cluster headaches’ to which she responded ‘well not that’ … I immediately snapped back ‘Yes THAT, that’s my main illness’.  Rather than ask me about the condition she clearly knew nothing about she asked me if I had taken any paracetamol for my headache today!!!?

For those of you who are not aware of cluster headache and its treatment, paracetamol does not work! In fact It can make the situation worse, as can all pain killers.

Worst Pain condition known to man and no pain killers….so how does that work?!?

There are two main ways to treat cluster headaches: preventatives, which are normally medications that are taken daily and abortive’s which are treatments we use when an attack comes on.  I have taken more than 20 different preventative’s in the last eight years with varying success.  I currently take 3 preventatives used to treat illnesses I do not have but somehow they seem to work, these include verapamil (a heart medication primarily); pregabalin (an anti-epileptic); and lithium (a drug primarily used in mental health).  The side effects have been many and scary at times, but on the balance of things they were always worth the risk.  I am a bit 'zombified' and I subsequently have issues with my heart and my balance.  My limbs are numb and movement isn’t always easy, but I’ve developed coping strategies which help make things manageable but by no means straightforward.

Abortive treatments are not as abundant as preventatives.  For me, initially I  relied on a combination of injections of a drug called sumitriptan and Oxygen therapy.   I can no longer take the injections due to side effects but I have home oxygen.  Oxygen is taken at 15 litres a minute through a specialised mask.  I’m not sure how the oxygen works but it does, most of the time.

Interesting fact: The first person who wrote about cluster headaches and the success of oxygen treatment was Dr Kudrow, the father of Lisa Kudrow, better known as Phoebe from friends.

There are also other treatments that include ‘nerve blocks’ (injections into the nerves in the face, head and neck, that use steroids and local anaesthetic to block the nerves); ‘stimulators’ (wires that are implanted into the nerves and an electrical pulse is controlled by a stimulator implanted into your body.) I have tried both of these with successful results. I wrote recently about my serial multiple cranial nerve blocks and I’m sure I will find time to blog about my stimulator surgery soon.

So that’s how we treat it, with varying degrees of success. But what are we treating. What is a cluster headache? I can only describe my own experience’s so always ask others what their journey has been like.

Cluster headaches can be chronic where you have them daily with no respite, or episodically where you experience them for example for 6 weeks a year and then are symptom free for the rest of the year.

The pain of an attack is indescribable. It’s based around one eye and is excruciating. For me this is accompanied by a droopy eye lid, and one side of my face gets so red and hot that you could cook an egg on it.  Also accompanied by a runny nose and a runny eye; an Inability to speak; significant weakness and loss of feeling and movement in my whole left hand side.  In addition to all these physical symptoms I become terrified and irrational.  Those of you who have given birth and got to that ‘I can’t do it’, ‘it’s never going to end’ stage, well that’s the state I am in when 'attacking'.  I have bashed my head against walls, bedframes, bus stops, anything hard … I have broken the skin scratching my arm and face… I have broken my foot trying to walk before the feeling came back in my leg…I have also considered suicide.   

Did I mention cluster headaches are also known as suicide headaches.

My attacks last anywhere from 45 mins - 3 hours, but I often experience and see others report differing lengths of time.

At my worst, for just over a year I was having 20 hours of attacks each day, everyday.

Now do you think it’s a headache?

There is nowhere near enough research into cluster headaches we need so much more.

These are the things we don’t know:

• What causes cluster headaches? There are theories but no definitive cause;
• Why some of the treatments work;  I’ve often said how does that work and been given the answer ‘we don’t know why but it does’!
• What the optimum treatments are, whether this is pharmaceutical, medical or surgical we want the best outcomes.
• Why some people respond to some treatments when others do not; we are all different, but are our conditions the same?
• How to cure cluster headaches, until then I am stuck with this illness for the rest of my life…

What I do know about cluster headaches:

• They are considered the worst pain known to man;
• They SHOULD NOT be called headaches… They are not a headache.
• The complex nature of how they affect me never ceases to amaze me after 8 years of suffering;
• The worst part of this illness is other people’s reactions; yes this can be worse than the pain. The pain and I have learnt to live with each other. When people react negatively to my pain and suffering it hurts me more.  Don’t belittle what I go through…. It takes a true warrior to survive this.

So now you know a little more about cluster headaches…. I need to ask you a favour… please share this with at least one person, ideally someone in a medical profession! If you have cluster headaches the more people know about this illness the less we have to walk around justifying our experience so please share too.