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“I would get excruciating pins and needles all over my body; breathlessness walking anywhere; my hair was falling out; and I was depressed and anxious because I thought I was experiencing symptoms of IIH. I stopped taking the medication and realised all the symptoms were side effects and that I’d been misinformed about what the medication can do to your body and mind… The second type of medication I was prescribed came with a verbal warning: ‘These will probably give you kidney stones; drink plenty...’. I stopped taking medication altogether and went into remission 6 months later.”

- Mellissa Monsoon

When diagnosed with IIH, you are given medication like Acetazolamide (Diamox) or Topiramate, which are used to decrease the spinal fluid in your body, reducing the number of migraines. However, the side effects that come with these medications are often not communicated by GPs, so patients often confuse the side effects of the medication to be symptoms of IIH. People with IIH have created the hashtag #devilmox because of the severe side effects. 

This artwork shows porcelain pills and fragments of a pillbox with descriptions of each side effect experienced by an individual taking these medicines. 

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