A patient experience

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by Stephen Mumford

Unless we are extremely lucky, we have all been patients within a health system. I now also theorize about it. It might be that the Cause Health project immediately resonated with me because of my own early experiences.

Around the time I hit puberty, I started having terrible, debilitating headaches and nausea about once a month. An episode would begin when I lost half of my vision and one side of my body went numb. An hour later, the headache would start. It felt excruciating, like a nail was being driven into my brain. There was no way to get in to alleviate it and I was knocked out for at least 24 hours. Painkillers wouldn’t touch it and usually just made me sick. Once this became a regular occurrence, it cast a dark cloud over my whole life. I was constantly dreading the next attack and it affected my confidence. I became mildly claustrophobic and panicky since I always feared it happening when I was in public or a confined space, such as on a flight.

What happened to me in the health system was quite interesting and it has become more so to me after I started specialising in causation and medicine. I was given a brain scan first but they found nothing of note. A diagnosis of migraine was given: an illness that was little understood at the time. The doctor prescribed a daily medication but I found that instead of feeling nauseous once a month, I felt nauseous all the time. I stopped taking the tablets and was back to square one.

I now understand better what the doctors were trying to do. With symptoms like those, it makes sense to first rule out anything drastic and life threatening. Those same symptoms could have been caused by a brain tumour. It makes sense to investigate that first. And once I had the all-clear, I can understand why the professionals were content to offer me the most likely other explanation. That also put them in a position to prescribe the drug thought most likely to alleviate those symptoms. Unfortunately, the side-effects were too unpleasant. There is causation all over the place here.

But there was more causation to come. Some years later, a work colleague started talking to me about health, diet and lifestyle and I was led to chance upon a book on headaches and migraines in a popular health food store. The book suggested a very different approach from the medical model I had encountered. Instead of adding a drug to counteract the symptoms, what about removing the cause of the migraine? There was a suggestion of common triggers: a list that included alcohol, cheese and chocolate. A scientific method was suggested. Cut one, and only one, out of your diet for a month or two and see if the migraines stop. If they don’t, you can reintroduce that food and remove another one instead.

I went down the list, abstaining from some of my favourite things, but without success. Finally, I came to the item I was dreading most of all: chocolate. I loved chocolate and really hope that it wasn’t the cause of my problem. Sure enough, though, when I stopped eating chocolate, the migraines ceased immediately. This marked a huge victory and the method depended upon the feature that causes make a difference. Remove the cause, and it tends to make a difference to the outcome.

That’s not quite the end of the story. Being human, I naturally seek what pleases me and hope that I can get it. It occurred to me that if I just had a little bit of chocolate from time to time, it would still be enough to keep the migraines away. After a few weeks of little treats, however, I had another massive migraine and was very ill. That was it. From that day forth, chocolate has never passed my lips. A cause tends to be followed regularly by its effect. And by reintroducing chocolate to my diet, and having the symptom return, I was now extremely confident that chocolate was the cause.

It has almost, but not quite, been trouble-free since then. After a gap of ten years, some migraines started again. But why? What could be the cause? I wasn’t eating chocolate, I knew. But had something changed in my diet? Yes. I had started drinking red wine, which I’d not previously had. That had to go straight onto my banned list. So too, another decade later, did whiskey, for the same reason. It seemed that anything I liked would hurt me! But at present, I am migraine free.

The Cause Health project explores many of the issues that this story illustrates. Understanding and managing health and illness is so much about identifying and controlling the causes. But Cause Health looks for improvements to the medical model too. I have no complaints about the free health system that I was put through. It was full of excellent, caring people and we can suggest how it might be improved without attacking their efforts. Looking back, though, I can see that there was a particular paradigm within which the practitioners thought. There should be a drug for my illness. Something could be added to me that would defeat my symptoms. No one asked about my lifestyle or diet. It was never suggested that I could subtract the cause. The pain was so bad, and so regular, that my life was hell. But I was largely left to manage my illness on my own. I had a few lucky breaks that meant I came through it intact. Medicine could, and should, do better than what I experienced.

Migraine is much more understood now and I hope and believe that I would receive a different treatment if I presented my symptoms today. And the fact that medical professionals and philosophers are now in dialogue, in projects such as Cause Health, encourage me that progress will be made. We have shared goals to cause the alleviation of suffering and promote a happy and long life.

Author: CauseHealth

CauseHealth - Causation, Complexity and Evidence in Health Sciences

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