The Beginning…

It all started around February of 2016…. terrible headaches which would cause me to double up in pain and be bed bound.

At first I was naive thinking it was stress or my vision needed testing, I left it a while to see if it would settle down, only it got worse. A visit to the opticians would fix it….. ‘Papilledema’ he said, only I had absolutely NO idea what he was talking about.


  • Optic disc swelling that is caused by increased intracranial pressure. The swelling is usually bilateral and can occur over a period of hours to weeks.

The optician informed me I may have a condition called IIH (Idiopathic Intracranial Hypertension), which can also be called Pseudotumor Cerebri. He informed me to visit my GP so they could make a neurological referral, meanwhile all of these medical terms and supposed referrals were freaking me out a little, I thought I may just need glasses, or I was right in thinking it was stress-related.

Idiopathic Intracranial Hypertension (IIH)

  • A neurological condition of unknown cause defined by increased intracranial pressure (ICP) around the brain without the presence of tumour or disease.

Shortly after visiting my GP I had received a letter from the hospital for an appointment with a neurologist – 27th July 2016. It was suspected I had IIH after the neurologist looked in the back of my eyes and also came to the conclusion of having ‘Papilledema’, she had then organised for me to have all these different investigations planned to fully diagnose me with this condition.

  • MRI Scan
  • Referral to St George’s Hospital for a spinal tap/LP
  • Start medication
  • Referral to Dietitian
  • Referral to Ophthalmologists
  • Review in 2 months

Spinal Tap/LP

  • A medical procedure in which a needle is inserted into the spinal canal, most commonly to collect cerebrospinal fluid for diagnostic testing.

It was explained to me that I most probably do suffer from IIH, due to my weight and age, however I was frightened of some of the facts the neuro doctor told me…

Vision loss, headaches, ringing or whooshing sounds in your ears, pain in your neck and shoulders diverting down into your back, nausea, vomiting and/or dizziness.

IIH prominently affects women who are overweight between 20-50 years of age, therefore me being an overweight 24-year old was bound to be suffering from it.

For someone with IIH, the brain just keeps filling up with fluid. None of it get’s reabsorbed into the body, so that every nook and cranny is filled with water, and then more water tries to fill up and there is not outlet for the water, which puts pressure on your nerves and blood vessels. It causes your optic nerves to swell, which can damage your eyesight.

Next stop….. St Georges for a spinal tap 🙂


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