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Patient Stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”
“It’s challenging to describe this invisible illness and the severity of how living in chronic pain everyday can change one’s life.”
“I was aware that the recovery from this rare life changing and challenging condition was also a rollercoaster recovery.”
“Don’t be scared to take loved ones to medical appointments if needed and don’t be afraid to ask for help when you are struggling.”
“Sharing my experience with others with the same condition offers a sense of familiarity and commonality to us.”
“As I’ve started a healthier lifestyle, I don’t feel that IIH is necessarily weight related, but more so related to what we eat.”

You are not alone

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