Jill's story

JillIt wasn’t until I reached the fine age of 22 that I experienced my first migraine. It was a frightening experience as I lost part of my vision and had no idea what was happening to me. What followed were sporadic but debilitating migraine, brought on largely by stress and self-medicated at the chemist with Migraleve and accompanied by the solace of a dark room. My symptoms were classic migraine with right hand side excruciating pain, sensitivity to sound and light and visual interference.

It wasn’t until three years ago that my migraines intensified and I went to the doctors for numerous prescribed drugs (sumatriptan becoming my go-to drug of choice). The frequency had increased significantly and it felt like my migraines were taking over my life. If I wasn’t experiencing a full blown migraine I had that hangover type headache that lasts for days, the brain thump, the inability to look at stripes or patterns. I’ve since come to learn the term ‘silent migraine’, where the aura symptoms exist without the actual head pain. Whilst the omission of pain was a blessing, the tiredness and distorted vision were quite restrictive. The constant ‘Cog-Fog’ made me wonder, at times, whether there was actually something much more sinister going on in my brain.

I was referred to a neurologist in June 2013 following several “seizures” and an admission to hospital. As a serving Police Sergeant these “seizures” dealt a difficult blow to my ability to perform as an Operational Police Officer. Work was very supportive as I underwent tests to determine the cause of these “seizures” which typically left me in a disassociated state, frozen in a set position and unable to move or speak. To add insult to injury my tongue would at times protrude from my mouth, I would jerk and my arms would often remain stuck in position after I came back round. To say I found the whole situation professionally embarrassing would be quite the under statement!

I have seen four neurologists since these “seizures” began, tried a cabinet full of different drugs (verapamil, topiramate, propanolol, amitriptyline) and undergone several tests (MRI, EEG, an inconclusive Sleep Deprived EEG).

I use the speech marks around the word seizure as this word is only used to describe epileptic attacks, but for me personally it is the best descriptive for how I feel when my brain suddenly decides not to play ball anymore, it’s as though my brain just seizes up for a little while before relenting and giving me back control.

The neurologists have concluded that in the absence of anything else these attacks are in fact migraine related. I must admit that I struggle to see the correlation, but who I am to argue with the professionals. When you tell someone that you suffer with chronic migraine, I doubt very much that they understand the true assault on your body that this condition causes, the magnitude of the pain, the exhaustive after effects, the impact on your desire to be around people in busy environments. In short, you feel like a fraud.

I have been retired from the Police Force after 14 years of service, a decision that came with great sadness and a sense of loss. I no longer drive, in case I suffer from an attack whilst behind the wheel of the car. Whilst this may sound all doom and gloom I am actually in a much better situation now. I no longer have to wear a brave face and pretend that I feel fine when I really don’t. I can stay in my pyjamas with the lights down low and snuggle with the dog when light and noise are enemy number one. And when I feel fine I can carry on with my day just like before. I have a very supportive family who try their best to understand and look after me when the “seizures” strike.

I know this migraine phase will eventually pass, unlike others whose invisible illnesses will never pass and that impacts on their lives every single day. I feel blessed for the support and care of the NHS, Leicestershire Police, and most of all my friends and family (not forgetting my trusty companion Scout the dog).

The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.