On 24 February 2016 I was invited by the European Headache Alliance to speak at a lunchtime event at the European Parliament about my life as a chronic cluster headache patient. This is the speech I gave.
Thinking back I must have had my first cluster headache attacks around 2002/2003 when I was studying computer science. I used to get headaches on the right side of my head every other day for 4 to 5 weeks. This happened three times a year. They always occurred around lunchtime, so I figured it was because I was hungry. This idea was further confirmed when the headache would disappear after I had eaten. Only later did I learn that they would go away automatically after one hour.
This pattern continued when I started working as a software designer: A couple of times a year over the course of 4 to 5 weeks I would have headaches on the right side of my head. The timing shifted from lunchtime to 9AM. Attacks lasted for one hour. That is the main reason I only got diagnosed after 5 years. Because the attacks happened in the morning at work, by the time I got home I didn’t think about them anymore. Until a week in March 2007: The attacks were getting more frequent and more painful. But in that week I started having 2 attacks per day. One in the morning and one in the evening. That’s when a went to my GP to figure out what was wrong.
I was lucky enough my GP was somewhat familiar with cluster headaches and she sent me to a neurologist at my local clinic right away. He confirmed her suspicion and I was officially diagnosed with episodic cluster headache. He started the treatment with verapamil and provided prescriptions for sumatriptan injections to treat attacks. Over the next years the following pattern always occurred: I got better for a couple of months, then the attacks started again. More frequent and more painful with each iteration, until the point where an attack truly is the worst pain I know. I would see the neurologist, he would tweak my medication, and the cycle started again.
In 2010 he reached the limits of his knowledge and I was referred to a professor of neurology in Antwerp. He had some more ideas to try, but basically with the same results.
In 2010 I also had to miss work due to cluster headaches for the first time. I was unable to work for a week on two occasions during that year. That triggered me to keep track of every attack had starting on 1 January 2011. Doing this allows me and my doctors to get insights in the progression of the disease. Anyway, in 2012, the Antwerp based neurologist said there was nothing more he could do for me. That goes to show how unknown this condition is, even to a professor of neurology. On top of that I started to get isolated attacks in between clusters. The condition was shifting to chronic.
Luckily, there are neurologists who know and study cluster headaches, so I was referred to one of them in 2012. Professor Paemeleire of the university hospital of Ghent knows all about cluster headaches, and reassured me that there were still options available to help me. So the search for a good mix of medication continued. Because I was getting more and more attacks, I started to use oxygen as a first choice in trying to stop attacks. This is a safer and more pleasant option than the triptan injections, but it doesn’t work all of the time. The triptan injections can only be used 2 times per 24 hours, which is not enough as there are days with up to 6 attacks.
Over the last years the attack frequency went exponentially up. In 2013 I was able to get an SPG neurostimulator implant for free to deal with attacks. This device is designed to stop attacks and I am able to do so for about half of the attacks I have. It’s about the same success rate I have with oxygen, but the neurostimulator device is a lot more portable, so I now use a combination of the stimulator, oxygen and triptan injections to deal with attacks. We hoped the stimulator would also lower the amount of attacks, but that was unfortunately not the case. On the contrary, last year I had almost 700 attacks.
This has quite an implication for my personal and professional life. The big problem is that there are weeks on end with at least 4 attacks per day. Often during the night as well. They do wake you up, and when that happens the pain is immediately at its peak. Because of this I just sleep from attack to attack during those weeks, not being able to do much of anything, always tired and unable to focus. But despite this fact, I refuse to take the cluster headaches into account when I’m making mid- to long-term plans. If I did, I never would have gotten married, I never would have had a wonderful 3-year-old son and I would never plan a vacation anymore. I accept every invitation I get with a warning that I might not be able to attend, but I always decide on the day of the event whether I go or not. Unfortunately this happened a lot last year. I missed a couple of weddings, I spent most of my time inside when we went on family trip to the coast and I had to cancel a couple of dinners with friends and family. To be able to enjoy my planned vacation in Greece, I got an occipital nerve block to keep me free from attacks for a couple of weeks. This worked perfectly and I was able to enjoy my vacation and do some work when I was back at home.
When I’m in the middle of an attack, I curse and moan, but when it’s all over and I see my little boy running around the house or I look at my wife, I know that life is still worth living. There are pain-free moments, and I cherish every single minute of them. When I’m pain-free I also try to work as much as possible, because I like my job. But I also realise not all my fellow sufferers are like this and a lot of them barely leave their homes anymore. Leading to depression or worse. On top of that, people lose their jobs because of this terrible illness. I should know, because I’m one them. I’m still in my term of notice, and I still work for my company, doing a job I do well and a job I love to do. And that is why we so desperately need a prophylactic treatment for cluster headache that is easily accessible to all patients who need it. That is why we need research that can provide such a treatment. If a treatment were available that can reduce the number of attacks drastically, I can keep my job. A treatment like that could make the lives of millions of people better, and I’m not only talking about the patients here, but also their families, friends and employers.
I thank you.