March 15, 2013 was the last time I had a cluster headache attack. Essentially, I’m closing out a third, pain free year. I don’t know what it means, since before 2013, my cluster periods seemed to come faster and faster. 2013 was also the year I had a pulmonary embolism, but hopefully it can also be the year where I had my last cluster. (pretty plx?)
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.
It’s been seven mornings without an attack. Considering how metronomic the attacks have been, and how frequent, I think it’s safe to say my cluster has ended. I’m really happy it’s over, really, really happy.
It’s been the worst, the most persistent and the heaviest cluster I’ve had to deal with, and it’s left me completely emotionally drained. Writing this, I feel the pressure of tears selling up behind my eyes. I don’t know whether it’s relief or the memory of the attacks, but it feels like the stress of the last month is waiting to burst from my head through my tear ducts.
The pain has been overwhelming, the frequency has been even worse. The almost clockwork timing meant I was almost certain to wake up to the feeling of someone stabbing me just below the eye, which lead to horrible nights where I got little sleep and no rest. Enduring the pain almost seemed easier than enduring the wait. Almost.
A strange side effect of the relief is a the question; what now? When you dedicate your life to a large extent to dealing with the attacks, you let your social life, professional life and all your hobbies slow down to a crawl. Now comes the inevitable climb to put my life back in order. Of course, that sounds more dramatic than it is, but it feels like a Herculean task nonetheless.
I am very grateful for the help and support people have offered me. While its been a solitary few weeks, and while the attacks are a solitary burden, it’s good to know people care. Especially my brother and sister have been a great help.
Could it be?
This is the third day without an attack in the morning. It’s also almost the end of the fourth week. I’m cautiously optimistic that I’m nearing the end of the cluster. It’s been a tough one and I’m ready for it to be over so that I can get back to sleeping normally, dropping the stress weight and resuming my social life. But, like an alcoholic, I need to take it one day at a time. I wish you all a pain free day.