I thought I should start this blog with an explanation of my condition and some background to my story. IIH (Idiopathic Intracranial Hypertension) is a rare neurological disease that affects about 1 in every 100,000 in the UK. It has no known cause (idiopathic) and is a condition where there is a build up of csf (cerebral spinal fluid) around the brain causing raised intracranial pressure. This increased pressure can lead to a range of symptoms that mimic symptoms of a brain tumour, and can result in long term sight problems and even blindness. The majority of people with IIH are diagnosed when they visit an optician or have a neurological exam that shows optic disc swelling or papilledema; which is the main diagnostic and life affecting symptom of IIH. A lumbar puncture is performed and a record of the opening pressure indicates if there is raised pressure. Because of it’s rarity and lack of money for research; there is still so much to learn about this condition and there is a lot of controversy, especially amongst neurologists and some of the more forward thinking practitioners, who are working on groundbreaking ideas to try and deal with the care of this brain disease more thoroughly by working with sufferers, members of the IIH UK charity; even speaking at the annual IIH UK charity conference.
For more information please visit Iih.org.uk
So this is the tricky bit for me and many others like me and possibly even others who have these symptoms, but because doctors know so little about it, continue to suffer. The symptoms of IIH are almost exactly the same as a migraine and a neurologist is likely to always put all the symptoms down to being migraine. This is almost fair enough, because they often aren’t even trained in the complexities of migraine, the most common neurological disease in the world, let alone a rare disease such as IIH. A migraine sufferer reading the symptoms of IIH will recognise them all as familiar, except papilledema. And now for the biggest controversy of all: you CAN have IIH without papilledema! But many, many neurologists do not accept this and this is where my battle began!
I had a previous diagnosis of migraine and my gp had already sent a referral back to my neurologist in November 2013 as my migraines were getting more frequent and were not responding to the usual migraine abortives. I had tried, paracetamol, ibuprofen, aspirin, migraleve and 4 different types of triptans. I saw a cranial osteopath, practiced Pilates, ate a healthy diet, didn’t drink or smoke, and didn’t consume any of the normal foods and drink (and more, as I’d kept a diary and tried cutting out gluten, yeast, sugar etc etc) thought to trigger migraine. When the ‘migraine’ was still there after a week, my gp decided to put in an urgent cancer referral, concerned that my headaches worsened on standing and bending forwards. The neurologist confirmed that I had ‘chronic’ (classed in the UK. As 15 days a month or more) migraine but sent me for an MRI to ‘reassure’ me. But I was confused, surely nobody could suffer from a permanent migraine? A friend suggested I find a support group. As I found leaving the house so difficult, due to my noise and light sensitivity, I looked on Facebook and couldn’t believe that I had found so many people who also suffered permanent migraines. I joined a few groups but became more and more depressed as I read about people whose lives were being ruined by chronic migraine; the groups were just so negative-not my bag at all! Then I found Mission Migraine and from that day forward my outlook began to change and I realised that here I had found an amazing bunch of people who suffered terribly with debilitating and heartbreaking migraines but could laugh with me, cry with me and hold my hand through the toughest days. I was lucky enough to meet a whole new bunch of friends that completely understood me. Since then I have gone on to find other groups that also have the same ethos and have made me feel at home immediately and through being so sick, I have found such a positive; a whole new bunch of friends that completely understand. They just get it!
One of the groups I found was called whooshers.com because my GP (who has been amazing-I am so lucky here) and we recognised that my Tinnitus was in two forms. I had normal tinnitus that is occasional ringing but more often a drumming noise AND much more importantly, PULSATILE Tinnitus; where I can constantly hear my own heartbeat. This is where I had my eureka moment! I realised there were a group of people who had very similar symptoms to me and they had also often been diagnosed with migraine; however, like me knew it was something more than that. I then found (amazingly) a group of people from the UK who were discussing a surgeon based in Cambridge; who specialised in pulsatile tinnitus. My gp referred me to this amazing otologist-now referred to as The Wizard (an ear and skull based surgeon) and within minutes of him palpating my neck he was convinced that I had raised intracranial pressure. Nearly 18 months later and a lot of controversy, that like a prince song: ( uummmm….a blog title on it’s own one day soon; I’m finally embarking on my first surgery in 4 weeks time! Here I am talking a bit (well, quite a lot tbh) about my condition, my symptoms and my philosophy on life.
Note: Lighting has been altered so you can see Laura 🙂
And so, as my journey continues, I know it’s going to be a long road to get to the lights at the end of the tunnel but I am determined to ensure that the path is as happy as it can be and will share with you my funny stories, my secret to staying positive and even a few tears of frustration and heartache as I travel my very own yellow brick road!Published in