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"You just have a headache"

By Kate

13 years ago, my life changed forever. Before then, I’d never had any headaches or migraines (apart from the occasional hangover!).

The day it all changed...

While on holiday in Mauritius, in the space of seconds, I was overcome with enormous head pain. From that moment, I was unable to be in any position that wasn’t lying perfectly flat without excruciating pain. Even a pillow raising my head caused so much pain I was immediately sick. I was unable to even shower for the first month, and would have to limit even attempting to get to the bathroom to use the toilet to once a day.

On my return to England, I was taken straight to hospital from the plane...

There I was told by emergency staff that I was dehydrated and the residual pain was due to medication overload. Over the next 2 days, doctors attempted 7 lumbar punctures, each time getting a dry tap. Eventually, surgeons got involved and managed to get 6 drops of spinal fluid, filled with blood. I was discharged on the basis that the blood was (in their view) from the multiple attempts at lumbar punctures, and I was told to see my GP if the headache didn’t resolve with fluids and no more painkillers.

You probably won’t be surprised to know that I wasn’t ok.

In fact, I didn’t sit upright for a full day for the next 5 years. When I eventually managed to see a neurologist 3 months later (through private insurance I got through work, not because I could see an NHS one!), I was diagnosed with spontaneous intracranial hypotension. In short, this meant that my spinal dura spontaneously burst, and my spinal fluid had drained out completely. My brain had sunk through the back of my skull, scraping on the skull as it did so, causing multiple brain bleeds.

It took 3 years to find the point at which my spinal dura had torn...

My surgeon described trying to find the source of the tear as ‘imagine you had a leak in a hose, and needed to find out where it was - but you buried the hose underground’. Luckily for me, the rarity of my condition and the challenge of locating the tear was exciting for radiologists, who went out of their way to invent ways to find it. Without them, my life would be very different today (I’d probably still be lying flat somewhere). Unluckily for me, it had torn in the most difficult place to access, at the front of my upper thoracic spine.

Since then I’ve had 7 brain surgeries, 2 spinal surgeries, a spinal stroke, a brain stroke, 3 bouts of meningitis, hemiplegic migraines and chronic daily migraines. My body is also unable to regulate spinal fluid pressure, so it swings between too low, and too high.

Despite this, every time I go to A&E, I get sent home with ‘you just have a headache’.


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