Karen's Story

My life changed forever after an innocent visit to my optician complaining of flashing lights in both eyes. Within three days I had a CT brain scan, the first of many lumbar punctures and a diagnosis of IIH.

In the beginning I had no other symptoms other than these annoying flashing lights so no treatment was started. However, sadly within a couple of weeks and while abroad on holiday I started losing my peripheral vision and began getting double vision. It was then a race against time to save my eyesight and I began the gruelling treatment of weekly lumbar punctures (LPs) for 6 weeks and only a high dose of steroids for three weeks saved me from getting an emergency VP Shunt operation.

Thankfully my pressure levels stabilised and my sight loss stopped, however my pressure remained higher than normal and the damage to my eyes had been done and the result was permanent peripheral sight loss – I couldn’t drive for months and all the medication was making me feel horrible. I felt like I lived at the hospital as I was never away from the eye clinic. By this time I was now also suffering from the typical IIH headaches, tinnitus and nausea, and the only relief came from getting an LP every 6 weeks.

After 9 months, I then developed another eye condition called Uveitis, possibly as a result of the trauma and damage to my eyes that IIH had caused. This condition led to courses of steroid eye drops, an eye injection, immunosuppressant medication and eventually long term steroid medication which I am still having to take – this period was one of my lowest points and I was fearful of what the future would hold with both of these conditions.

After over a year of suffering at the hands of IIH, with the help of my Eye Doctors and Neurosurgeon I made the difficult decision to agree to getting a shunt fitted, as my pressure remained high and I couldn’t go on getting LPs so frequently. So six days before Christmas 2011 I had my Lumbar-Peritoneal Shunt fitted and so far so good! I have recovered quickly from the operation and despite the shunt causing some stomach problems I can’t remember the last time I had a headache and my eyes are showing slow signs of improvement - I just pray my shunt behaves itself and I can get my life back on track.

My IIH journey has been relatively short (17 months) but at times traumatic: 16 Lumbar Punctures, 2 CT Scans, 1 MRI Scan, 1 Bone Scan, 1 Chest X-ray, 2 Stomach X-rays, 1 Abdomen Ultrasound, 2 ECGs, 1 Heart Electrocardiogram, 1 24hr Heart Monitor, 1 eye ball injection, 4 fluorescence angiograms, 9 different types of medication, 3 types of eye drops, weekly trips and endless tests at the eye clinic, permanent peripheral vision loss, 1 LP-Shunt Operation – but hopefully I am on the road to IIH remission!

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