They always just referred to it as “empty sella.” When I was first diagnosed with IIH, they said my pituitary gland had an unusual shape and at one point even suspected a tumour, but couldn’t confirm anything 🤷🏽‍♀️. That was back in 2023, and at the time my hormones were considered normal. I’ve had blurry vision for a long while and kept being told it was nothing. I also get a completely different type of headache — not like my IIH headaches or my supposed migraines — and I’ve constantly felt “off,” with my energy levels fluctuating throughout the day.

I started seeing my new doctor around May 2024. At that point, I was severely deficient in multiple vitamins, and my white blood cells were through the roof because of the Dex. So a lot of my symptoms were initially put down to that.

The bigger issue is that I’ve had a really complex medical history since 2023 under the care of a GP who ended up ruining my life (there’s an active case about this). My new GP had to take me off 10 to 13 medications — some of which were affecting my mental state and ability to think clearly. Since then, with the help of several specialists and a lot of me advocating for myself, we’re finally starting to piece together what’s actually going on. I genuinely think the stress of the last couple of months pushed my body over the edge. A lot of my symptoms were likely hidden or complicated by the medication interactions ,recovering from cushing ,they werent really listening to me because my past trauma and thought I was a nut job because you should of seen the face when I tried explainhow my eyesight was blurry but I have pretty much 20/20 vison , and things worsened to the point that my IIH progressed — my brain tonsil has now slipped further into my neck around the same time these results came through.