A while back, while I was in my last cluster, I noticed a sharp increase in frequency, regularity and intensity of my cluster headache attacks. I talked to my doctor and said I wanted to try O2 and she told me to go and talk to a neurologist first. Turns out she referred me to one of two cluster headache specialists in the Netherlands. The doctor’s name is Dr. Couturier of the Boerhave clinic in Amsterdam, and I recently had an appointment with him. It was emotional. It was enlightning.
He told me I was his 427th cluster headache patient. He was a fountain of knowledge. He confirmed that I am not, what he called, a “100% cluster patient,” but thought that from my description that my cluster headaches were slowly maturing. He said it was possible that my clusters would appear more frequent, that the frequency of attacks could increase and that it could turn chronic, though the chance of that was small.
He asked me to detail my history, and I told him everything. He was particularly interested in the medication I had been perscribed. While I was telling him how I first had the subcutaneous immitrex injectors for my first cluster, and how I had been denied that medication and given all kinds of fairly useless other medication for each following cluster, leading to me demanding to get O2 and my subsequent arrival in his office, I got a little emotional. When I was done, he told me something that was such a sigh of relief, such a confirmation of all my frustration; he said that he got goosebumps while listening to my story. He called the denial of “the medication that [I] needed” mistreatment, he likened it to abuse.
He was quick to explain, however, that studies had shown that in the Netherlands, during the average career of a general practitioner, they would only encounter three cases of cluster headache patients and would rarely draw the right conclusions. He said that it was often misdiagnosed with migraines, but it’s easy to differentiate from them by the urge that cluster patients have to move, while migrain sufferers just want to lay still and avoid any stimuli. When I said that I constantly rocked back and forth and didn’t know what to do with myself due to the pain, he said something interesting; he said that it had nothing to do with the pain. He said that even if the pain element of a cluster attack would be removed, we’d still have the urge to move. It’s the brain that provides the urge to move, not the pain.
He walked me through a lot of really interesting information like that, including a bunch of different medicinal options he had to fight the attacks and the pain during the attack. He had a waterfall scheme, starting at the most successful drug combination, and then choosing less savory alternates when the previous drug would no longer work or didn’t have any affect. One of them was Lithium, which made me take a step back for a moment, considering how it’s only used in really hardcore psychiatric treatment. He told me that one of the cases where Lithium has a lot of success is with people suffering from bipolar disorder. He said that, in a way, bipolar disorder falls in a similar category as cluster headaches, since they all have something to do with bio-rhythm. Same goes for the much perscribed Verapamil, which is usually given to people with a heart-rhythm problem.
He told me that I could call the office at any moment, ask them to book an appointment, and if I told them I was a cluster patient I’d be moved up to the front of the line due to the immediacy of the problem. He wrote me a perscription without a date on it, for quick release Verapamil and subcutaneous Sumatriptan injectors. So whenever my cluster would begin, I could run to the nearest pharmacy and get the medication I needed. I love this man. Finally a doctor who gets it.