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 how I went from one neurologist to the other in my quest for relief.
Neurologist number two
The neurologist at my local hospital was at the end of his knowledge about cluster headache, and indicated he could no longer treat me. So my GP referred me to a professor of the academic hospital of Antwerp. He immediately ordered an MRI scan of my head to rule out other possible causes of my headaches. As is normal for cluster headache patients, the MRI is completely normal. At least when there’s no attack happening while scanning. During an attack there is some elevated activity in the hypothalamus. That part of the brain has something to do with the biological clock, which explains the clockwork nature of attacks.
Oxygen to the rescue
The professor advised me to try using oxygen to treat attacks. He explained how I could obtain bottles of oxygen and how I should use them. The oxygen was effective for about 50% of attacks. It only worked when I started breathing the oxygen at the earliest onset of an attack, so whenever I felt the slightest sign of an imminent attack, I Usain Bolted myself to my oxygen tank. If the pain already reached it’s climax the oxygen was (and still is) useless.
During an attack I had to breath 12 to 15 liters of oxygen per minute through a non-rebreather mask. That comes down to about 300 liter per attack. With a tank of 4400 liter I could treat 14 attacks. In those days (2009-2010) oxygen was an excellent way to fight the beast: you can do it as much as you want (if you have enough tanks that is) en there are no side effects.
Adding lithium
It was clear that I still had too many attack periods, so we decided to stop the topamax treatment and to start lithium. Lithium is used as an anti-depressant and has some serious side effect like shaking and quivering, added weight because of water retention and frequent peeing. But history kept repeating itself: I was attack free (but not entirely, sometimes a lone attack slipped through) for a couple of months and after that hell would break loose again. During those periods the professor regularly prescribed prednison cures. The cluster would end, but it was always nuclear whether this was because of the change in meds, or natural remission.
Unable to work for the first time
I was alway able to keep working through the clusters. That is until June of 2010. Before that, during a cluster I had at maximum two daily attacks which I could abort with oxygen, imigran or codeine. But it got worse. In June of 2010 I was forced to stop working for a week due to too many attacks. This repeated in September. Eventually, when I was out of commission again in Februari 2011, I decided to keep track of every attack I had since then. I still do this and it is a useful tool to assess how bad it really is. It also helps the neurologist a lot in evaluating treatments for me.
Anyway, during the rest of 2011 it kept dragging on like this and at the beginning of 2012 the professor in Antwerp reached the end of his knowledge as well. He bluntly told me there was nothing more he could do, and I needed to learn to live with it.
A headache expert in Ghent
In that period my GP went to a lecture about headaches. The lecturer was professor Paemeleire of the academic hospital in Ghent. We made an appointment for me to have him look at my situation, but the waiting list to see the professor was very, very long. The earliest I could see him was December 2012. I’ll write about that next time 😉
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