Stephs story



Hi my name is Steph, I am 33 years young and I am a wife and mother to 2 wonderful young boys. I also have IIH!

My journey with IIH began back in 2011 when I went to my local GP complaining of terrible dizzy spells, especially around my time of the month. The nurse at my GP surgery did all the necessary checks and told me that all my observations were fine, advising me to stop cleaning my ears. With that, I went home and did as she had suggested but it did not help and I just had to get on with things.

I just about managed but, by the time 2012 had arrived, the dizzy spells had started to take on a bigger effect and had impacted on me at my place of work. I was a hairdresser with my own business, working in particular with people who had long term hair loss or were going through treatment. In doing so, I worked alongside McMillan nurses and the Little Princess Trust that make human hair wigs for children. I loved my job so much but I had to be on my feet all day, constantly moving around, bending my head etc. I struggled on for a few months more, at which point I started to get extreme fatigue and blurring of my eyes which did not catch up when I was cutting and doing colours. Getting really worried, I returned to my GP who then sent me for bloods which revealed that my liver was in failure. I had also begun to get tinnitus at this point and was having major problems with my kidneys and bladder, which did not empty completely and resulted in constant water infections. I was closely monitored by my GP, who also referred me to specialists in the ENT department to help with the dizziness and tinnitus. Whilst under the care of the ENT department, I was treated for and diagnosed with Meniere’s Disease, Labyrinthitis, Vestibular Migraine, Vertigo & Visual Vertigo, Pulsating Tinnitus and Cluster Migraines. All of the medication that they gave me just made me worse and I did not feel that I fell into any of those boxes.

Unfortunately, by the time Christmas 2012 came, I had to shut down my shop and I had my driving licence revoked as the illness had completely taken over. As a result, I had the unenviable task of putting friends, people I had worked with for over 12 years, in great financial difficulty and had to help them find new jobs. This was a very hard time for me and my family and we still had no idea what was wrong with me! At this point, my liver, kidneys, bladder, thyroid and bowel were failing and my eyesight was getting increasingly worse - I just thought it was because I was so dizzy. I had weekly trips to A&E, only to be sent home with more medication, and a question mark about dementia. At 29 years old, this was a shock but, at this point, I could barely string a sentence together, I had completely lost the use of my left arm and I had started having head tremors. I was now being closely monitored by a number of specialists and I still am to this day as my brain does not send the signals down to the bowel to stimulate it and the bladder.

On one trip to A&E, the consultant did a brilliant examination and, seeing something in the back of my eye that was not right, he sent me for an emergency appointment to the eye hospital. I went along with my sister who explained what had been happening with me but they did not think my suffering was anything to do with the eyes and sent me home. Naturally, I was extremely worried, as was my GP who sent a request to a specialist eye doctor at my local hospital. Whilst waiting to see the eye doctor, the ENT doctors had sent a request to a general neurologist, asking that I have an urgent MRI scan. This came back clear with the exception of my pituitary gland which was really damaged, raising alarm bells and possibly explaining why my thyroid had been playing up for some time.

By this point, I was completely blind in my right eye and my left eye was in big trouble; I was completely blind in the mornings for up to 45 minutes and if I turned my head or bent down, I would lose all my sight. The dizziness had also taken its toll on me. I could no longer walk alone or stand without vomiting, I was in a constant spin and I had no idea of space. Everything was out of shape it was a very scary time.

This takes me to August 2013 when I was seen by the specialist ophthalmologist. My husband explained what had been happening to me and the consultant put drops into my eyes so he could have a better look at the back of them. In doing so, he was shocked at what he saw and he asked if he could call his students in to have a look, saying that they may never see anything like this again in their lifetime. He then took my hand and said that I was not going mad, rather that he thought I had a condition called IIH. It was a very emotional day. Nobody had ever heard of IIH but I was so relieved that I finally had a diagnosis, one which seemed right the more research I carried out into the condition. Having been told about the risk to my eyesight, given a lot of new information and with a scheduled emergency appointment, I was happy that things were finally on the move, or at least I was until I was told that I would have to wait 8 weeks for my appointment. With my family and GP in shock at the delay, I sent an urgent fax asking if I could be seen sooner as, such was my worry about my eyes, I feared I would never see my sons grow up and meet new (and old) members of the family. Luckily, I managed to be seen that week and I was sent for numerous tests, a lumbar puncture, VEP (testing the nerve pathway for eyes to the brain) and a CTV (a CT scan with a dye). My pressure reading was over 40; this was taken down to 12, after which I was officially diagnosed with IIH. I instantly felt better but this feeling was not to last as, 2 days later, I was worse than ever.

My GP phoned an ambulance as I had now lost my speech as well. This would be the start of 3 weeks of daily lumbar punctures that turned into twice-daily lumbers, one in the morning around 5am and another in the evening around 11pm. My pressure was very aggressive as the CTV had identified that I had severe stenosis (a narrowing of the sinuses/veins) in numerous parts of my brain and damage to the torcular, the junction to all sinuses in the brain, affecting the way that CSF flows around the brain. At this point, we were now waiting for a bed in my local neurological hospital as my sight had become so bad; the lumbar punctures were helping to keep the pressure off, if only for a short while, and the new medication they had put me on was just not working.

On 28 September 2013, I had emergency brain surgery to save 100% of my eyesight. I am now fitted with a non-programmable VP shunt witch has saved my eyesight in the left eye but unfortunately the damage in the right eye was too severe to repair. I spent a long time in hospital after my surgery because of my sight - I had to be safe enough in the left eye to be sent home. My surgeons were amazed that they had managed to get my shunt in as they said my ventricles were the tiniest they had ever worked with; indeed they had warned family members and me that they might not be able to do it but by some miracle they fitted the shunt which is now named after the great Roald Dahl.

Fast forward to 2016 and I developed a clot and lost the hearing in my right ear, the hearing in my left ear is also slowing going now, the aggressive pressure means that the ear fluid can't escape which is causing progressive hearing loss.  I have also developed renal failure as my brain doesn't send the signals to my bladder necessary for passing urine which means that I now have to self catheterise 6 times a day.

To date, I am still under monitoring for all my secondary illnesses and last June I was discharged from therapy which I had on my arm & speech. I have lost my short term memory and I have impaired cognitive function and executive function impairment, something that affects everything in my daily life such as my strategy, organisation skills and personality to name a few. But all of my pain and discomfort just goes by the wayside because I am just so grateful that I get to see my boys’ smiling faces every day. I didn't find about IIH UK until I got home from hospital but luckily they had a meet up planned just around the corner, one that I attended, and I have never looked back. I have met some of my best and closest friends though IIH UK and, with their complete support, I am now on a huge mission to raise awareness and much needed funding wherever I can. My boys’ school have raised money and my family and friends have constantly been doing crazy things! We have been in the local press and I am currently lecturing to final year medical students about IIH, the work of IIH UK, life with a long term brain condition and how this affects me and others around me. I have just been asked to talk to the paediatric nurses as well so hopefully the next generation will be better informed about IIH. Inside all of us there is hope.

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