Tamsin Trevarthen

I have suffered with headaches for most of my adult life but in January 2011 I began to get daily headaches which were quite unlike anything I had experienced before. Having relocated to Ireland six months previously, for a bigger job, the general consensus was that they were attributable to stress. But I was never convinced by this. I just knew something was wrong. As weeks turned into months I was assessed by two neurologists, one of whom told me “there was nothing special about me”. Words that remain with me to this day and, in my view, should never be uttered by medical professional. I was prescribed a cocktail of drugs but nothing helped to alleviate my pain. Apart from lying down.

Ten months later, with no diagnosis, I reached a point where I was unable to work and my quality of life was minimal. I didn’t know where to turn for answers and felt more isolated from family and friends than I had in my entire life. I couldn’t tell anyone just how bad things had got. I tried many alternative therapies after feeling let down by the medical profession, the last of which was with a cranial osteopath. In our first meeting she laid her hands on my head and immediately commented that I had very little fluid around my brain. It felt very significant in my search for an answer.

That night I did my own research and read about CSF leaks, and for the first time my symptoms began to make sense. With that in mind I got an appointment with Dr Matharu at the NHNN shortly after and my suspicions were confirmed following ICP monitoring a few weeks later.

Two x caffeine infusions, four EB’s (the last of which was a success) and one lumbar infusion study later and I was still struggling with low pressure headaches, and the recommended solution was surgery. I was admitted for a VP shunt in February 2013 at the NHNN. The shaving of my hair was easily the most traumatic part of the experience! By the time it had started to grow again I had found a setting on the shunt which provided sustained relief and I slowly began to get my life back. But not life as I knew it!

I am delighted to be supporting the efforts of the CSF Leak Association and only wish that when I was searching for answers, the resources and support they offer had been in place.

Since my leak I’ve developed chronic migraine which requires constant management and medication! My love of travel has been hindered by my shunt which goes a little crazy on flights any longer than 4 hours! I now exercise whenever I feel well enough, to keep my body fit and strong - just in case – I eat healthily and have even been known to meditate! All a far cry from that globe-trotting party girl I used to be!