IIH | Specsavers Saved My Eye Sight

So, I have a thing. I've just been diagnosed with Idiopathic Intracranial Hypertension. Yeah, I had never heard of it before either.

At a routine Specsavers appointment, the opticians I regularly use, it was discovered that I had swelling behind my eyes. The optic nerves that connect directly to the brain have been affected causing Papilledema, which is often one of the first signs of blindness and indicate swelling in your skull. Finding that out and hearing the word blindness was scary. I've had to wear glasses or contact lenses all my life but losing my vision is something I'd never thought about before. Fortunately, the optician seeing to me was very understanding but there was an worrying sense of urgency as I had my eyes tested again more thoroughly and she made a call to the hospital. She also warned me that once at the hospital, I'd be tested for things like a brain tumour.

After attending the emergency eye clinic at the hospital, I immediately met a neurologist. In hindsight, my eye sight had deteriorated over the last few years and I had been having symptoms of IIH. In the midst of the chaos whilst I was being diagnosed, it was difficult to remember that. I had an MRI and MRV scan and a lumbar puncture which showed the arteries in my head have constricted, and the pressure (of the spinal fluid that the brain sits in) is over three times what is normal. Whoever invented spinal taps did the devils work, it was without doubt the most uncomfortable and painful procedure I've ever had done - which was not helped by a local anesthetic not working.

I'm learning about what the illness is now and how it can affect the rest of my life - there isn't a cure and there is no known cause. It's like living with the symptoms of a brain tumour everyday. I'm trailing medication at the moment, hoping that I can control the condition rather than the other way round. Unfortunately, there's no specific treatment and the few drugs that may work often become less effective the longer they are taken. More spinal taps terrify me, but not as much as the thought of brain surgery.

It has been a wild old time recently, but I'm grateful to Specsavers and the diligent optician who discovered the swelling and potentially saving my eye sight.

3 comments

  1. This must have all been horrible for you, I know the feeling of what feels like spending your life in hospital as I have done since I was born but eventually you get used to it and it gets easier and I hope this happens in your case too and they manage to treat your condition!
    Love Meg x x x
    http://beautythatsbritish.blogspot.co.uk/

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    1. Thanks so much for your comment Megan, sorry to hear you have had to spend your life back and forth from hospital. It isn't a nice place to be. Awww, thank you for your kind words, I am so determined to not let the condition beat me down any more! xxx

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