The Pharmaceutical Journal
Vol 268 No 7188 p338
9 March 2002

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Migraine

Pharmacists, who are also patients, describe in their own words what it is like to have to take a medicine for life

Living with migraine: like being on a medication merry-go-round

In the summer of 1994 I suffered my first migraine attack. Although I consider myself to be of an educated and intelligent disposition, it was a frightening experience and one that is still vivid. Eight years further on, migraine is very much a part of my life: often, during an attack, it feels like it has completely taken it over.

Those who have never experienced the horror of a full-blown migraine will find it almost impossible to understand the full extent of suffering. After all, "migraine's just a bad headache, isn't it".

It is difficult to describe how I feel. Physically, my attack consists of the typical severe, pulsating headache accompanied by nausea and vomiting, and more often than not I am totally incapacitated for at least three to four days. That is the clinical picture. Emotionally and psychologically it is a different story. I have lost count of the times that my partner has found me a crying, hysterical mess on the bathroom floor because the pain hurts so much that I want to tear my eyes out.

It was at the beginning of 1995 that I initially sought help from my general practitioner. First, because I had begun to realise that I could not manage this "illness" myself and, secondly, an increase in the severity and frequency of my attacks meant that I was often away from work, which was beginning to be frowned upon. Unfortunately, my initial consultation was by no means helpful and being told that I would probably "grow out of it" was not what I expected to hear.

Beginning of journey

It was only after an exceptionally bad attack resulting in a hospital admission that I began my journey on the prophylactic migraine medication merry-go-round.

Initially I was started on pizotifen and over the course of the next 18 months I worked my way through propranolol, amitriptyline, nifedipine, verapamil, clonidine and finally atenolol — not to mention the various analgesics, antiemetics, and triptans, all of which have worked with varying degrees of success. Currently I am taking high-dose sodium valproate as a last attempt before I have to succumb to methysergide.

It was only after suffering for the best part of three years that I think I truly began to appreciate how patients on my wards must feel. Watching them trying to cope with disease states far more terrifying and life-threatening than my illness was something I had previously overlooked. It is only now that I can understand how hopeless and helpless and illness can make you feel.

In the first few years of searching for the best treatment strategy, I had a significant amount of time away from work, which I was made to feel guilty about. Along with the guilt there was also the feeling that perhaps my colleagues thought I was not quite up to the job. No doubt this line of thinking did nothing to prevent further attacks but perhaps has made me more determined to try to find a cure.

Two neurologists later and after courses of acupuncture, yoga, herbal medicine and shiatsu, I am still no nearer to achieving my goal. I have now got to the point where a bad attack every few months is almost bearable and definitely an improvement on suffering every few weeks.

It is unbelievably frustrating to be a health care professional yet not be able to find a solution to my problem. I sometimes think it is more of a hindrance to have the knowledge that I have about medical conditions and their supposed cures when for myself it is not a simple situation. It must be all too easy for some patients to accept their problem if the treatment that they receive does not provide the relief that was expected; there are days when I feel like ditching the tablets and resigning myself to never having an attack-free life.

Some might think that for such a common condition I am over-estimating and being unnecessarily emotional about my problem. But not only do I have to contend with the physical effects of the condition, the disruption to my life in terms of lost working hours, cancelled social activities and letting down friends and family at the last minute is escalating all the time.

I have recently heard it said that patients ought to be in control of their migraine, rather than it control them. This would be my ideal.