A Year In The Life Of A Clusterhead


First, some background.

“Clusterhead” is a colloquial term used to describe cluster headache sufferers. Cluster headaches affect about 0.2% of the general population making them very rare indeed. Unless you are a sufferer, or live with one, it is unlikely that you will have ever heard of the condition. I don’t intend to explore the epidemiology of cluster headaches but those who are interested should look at the Wikipedia article and the Organisation for the Understanding of Cluster Headache (OUCH UK) site.

What is relevant to this post is the nature and severity of the pain experienced by clusterheads.

The pain of CH attack is remarkably greater than in other headache conditions, including severe migraine. The pain is typically described as burning, stabbing, boring or squeezing, and may be located near or behind the eye. Those with cluster headaches may experience suicidal thoughts during an attack as a result of the pain. It is reported as one of the most painful conditions.

 

There is no known cause and no known cure for cluster headaches.

Secondly, some information about me.

I’m male, 66 years old and a former Biology teacher. I retired six years ago. My first encounters with CH began about ten years ago but weren’t diagnosed until January 2010. I suffered a very serious episode whilst on holiday in South Africa and upon my return saw my GP who made the diagnosis. That episode lasted three months. My next episode began on April 1st 2012. This time I was in Sri Lanka and that attack also lasted for about three months. My most recent attack began on December 14th 2014 and ended on May 12th 2015. It was by far my most severe attack as well as being the longest and it is that episode which is the subject of this blog post.

My CH triggers are alcohol and exercise. On Sunday December 14th I cycled 45 miles, called in at my local and drank two pints of beer then went home for a hot bath. Shortly after emerging from the bath the CH attack began. On Monday morning I contacted the surgery and got an emergency appointment with my GP. ( I’m fortunate in that I can always get a same day emergency appointment.). She prescribed 120 mg Verapamil.

It’s at this point that my life changed dramatically. I stop drinking alcohol which, given my weekly consumption is between two and four pints of beer, I don’t find difficult. I also give up exercise. I normally cycle about 400 miles each month. I do it because it keeps me fit and healthy, but most importantly, I really, really enjoy it. I consider riding a bike to be important for my mental well-being as much as my physical well-being.

In the early stages of the episode I was getting three to four attacks each week, usually in the early hours of the morning so there were some pain free days. After a couple of weeks the frequency and severity of the headaches increased so I returned to my GP who increased the Verapamil to 240 mg and prescribed Sumatriptan nasal spray. The attacks continued. They changed from night time attacks to daytime attacks and then I got both night time and daytime attacks. My Verapamil was increased to 360 mg per day.

This pattern continued as the weeks passed and as time went on my mood began to sink. The Verapamil didn’t seem to be having any effect, the nasal spray sometimes took the edge off the pain but my life was being ruled by CH. I could cope with the night attacks better than the daytime attacks. They tended to be more severe but were over in about two hours. The daytime attacks were less painful but lasted much longer, often up to four hours. They usually arrived between 2 pm and 8 pm so once lunchtime arrived my day was effectively over.

I try to avoid descending into self pity but it was very difficult. In many respects I am better off than many CH sufferers. I am not a chronic sufferer and I don’t have to worry about a job or a young family. Despite being aware of my relatively benign level of suffering I was finding it more and more difficult to cope. When my episode continued beyond the usual three month limit I was heading for rock bottom. I had three short breaks, two of five days and one of six days. When the first one arrived I was optimistic that the episode was over. I felt better than I had in weeks. It came to an end on the fifth day. At 2.15 pm on a Thursday afternoon I got a severe attack. I’m not an emotional person. My upper lip is famous for its stiffness. When the CH arrived I was devastated and I cried, not because of the pain but because of the unfairness of it all. From my perspective life was bordering on the unbearable. Don’t jump to the wrong conclusion. I know that cluster headaches are sometimes called suicide headaches but even in my darkest moments I am a long, long way from that level of despair. It’s the unfairness that gets to me. I’m retired, I’m comfortably off and usually I can do the things I want to do – except when I have cluster headaches. I don’t drink a lot but I want to have the choice as to whether I drink or not. I want to get up in the morning and be able to choose to do whatever I want to do without the fear of having a CH attack. Am I being selfish? When so many people in the world don’t have the luxury of making choices perhaps I am.

The episode finally ended after five months. I had been visiting my GP every couple of weeks or so and she decided to try a short course of prednisone. I started with 60 mg and tapered to 5 mg over ten days. That seemed to do the trick although in the back of mind I wonder whether the episode just came to a natural conclusion. It took me a few weeks to regain my physical and mental equilibrium but life eventually returned to normal. I got a referral to a neurologist and we drew up a strategy for dealing with the next attack.

I’m still finding it quite difficult to come to terms with the effects of that episode. I resent losing five months of my life to cluster headaches. I consider 2015 to be the worst year of my life.

I hope that this post doesn’t come across as wallowing in self pity. I felt the need to try and communicate how cluster headaches affect me, both physically and especially mentally.

My best wishes to fellow Clusterheads.

Mike Warren

6th January 2016

 

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2 thoughts on “A Year In The Life Of A Clusterhead”

    1. Thanks Angela. My first serious attack was six years ago when I was in South Africa. The pain was awful and I was frightened and thoughts of a brain tumour crossed my mind. Once the pain had passed I was able to be more rational and realised that my symptoms didn’t suggest a brain tumour. I wrote that blog post before I read your blog (which is fantastic by the way) and ever since I’ve felt a bit guilty for allowing myself to be so self-pitying. Life can seem to be unfair and we don’t know what lies ahead but we have to get on with it don’t we? I hope your recovery is going well. Best wishes.

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