In this series of posts I try to describe my life with the beast as accurate as possible. Click the links below to read the previous parts of my story. In this post I write about my first encounters with professor Paemeleire of the university hospital of Ghent. A true headache specialist.
- My headache story – Part 1
- My headache story – Part 2
- My headache story – Part 3
- My headache story – Part 4
A headache specialist in Ghent
The previous part of my story ended on a real downer, the professor in Antwerp told me there was nothing more he could do for me. I just had to learn to live with the headaches. This goes to show the ignorance of cluster headaches, even a professor of neurology isn’t able to help the more difficult cases of cluster headache.
Lucky for me, my GP found the headache specialist I so desperately needed and scheduled an appointment with professor Paemeleire for me. This was in May of 2012, but I couldn’t see him until December due to a full schedule. Between May and December I was unable to work for another two weeks because of the cluster headaches. A cortisone treatment was tried to break the clusters.
One week before my appointment I was in the worst cluster I’ve had up until then. My GP arranged an urgent consultation at the university hospital in Ghent with an assistant of the professor. On Wednesdays they always free up some slots on the schedule to see cluster headache sufferers. If you call the reception and tell them you have cluster headaches, you can almost always see someone the next Wednesday.
That next Wednesday I was able to tell my entire story to an assistant of professor Paemeleire, she wrote everything down in my file so I didn’t have to repeat myself the next week. I also showed her my headache diary, after which she went to consult with the department head about my situation. A decision was made not to change anything at that time, but to wait what prof. Paemeleire would say the following week. However, she did assure me that there was still plenty that could be tried and the limit of what was still possible hadn’t been reached by a long shot.
The first visit with prof. Paemeleire was truly a breath of fresh air. I immediately noticed how fascinated he was listening to my story and the way he talked about cluster headaches. Judging from my diary he concluded that I didn’t have a typical case of episodic cluster headaches, but that the data suggests a chronic case. This was based on the fact that in my times of remission, attacks do occur now and then. You can take a look at that report yourself next to this text (click on it to see a larger image). This meant that I did have benefit from the maintenance meds (480mg of verapamil and a dose of lithium of which I don’t remember how high it was), but that at certain times a threshold is passed and attacks keep on coming.
By the way: the headache diary
I would like to break away from the story for a moment to tell you about the headache diary I’ve been keeping. Ever since the moment I had to miss work due to attacks, I’ve been keeping track of every attack I had since. Starting in 2011, the grid covers every day of the year. The figures in each cell represent the number of attacks I had that day. The color varies from green over yellow to red in five steps. Unfortunately in more recent years there were instances where I had to use a 6 in some of the table cells.
At the bottom row of the tables there is a totals field, I use this to generate all sorts of graphs to visualise the progression and behaviour of the disease. These graphs will come up later on this site. I encourage everybody who suffers from cluster headaches to keep track of the attacks, that way you know exactly what you’re up against, and it is of great help to your neurologist to assess your situation.
Back to the consultation with my headache specialist 😉
The plan was to up my dose of verapamil, the professor showed me studies that showed that you can go to up to 960mg of verapamil per day, provided your body can handle it. It is important to regularly check your heart with an ECG. The suggested dose was set at 720mg per day and to keep the lithium. I could get an ECG right away which showed no problems, so my verapamil dose could be upped by 80mg per 14 days. After every increment an ECG was taken by my GP.
I spent more than an hour talking to the professor about my head. I felt heard and understood and was pleasantly surprised about the way he talks about cluster headaches. He is truly fascinated by it, which is a good thing for me as his patient.
The next part of my story will be about further incrementing the verapamil. I’ll also tell you how I had to stop taking lithium and I’ll show you more of my headache diary.
I would also like to ask you to spread the word and raise awareness by using the share buttons. Leaving a comment is also always appreciated!