Patient Stories Archive

An Update From Alicia

“This journey has been painful, exhausting, and uncertain, and I am still seeking lasting relief. But I refuse to be defined solely by my diagnosis.”

Jim

“My instincts told me that I had to keep pushing and that I had to keep my body as active as possible because I didn’t know where all of this was leading. “

Nicole

“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.”

Tara

“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.”

Alicia

“It’s challenging to describe this invisible illness and the severity of how living in chronic pain everyday can change one’s life.”

Kiki

“I was aware that the recovery from this rare life changing and challenging condition was also a rollercoaster recovery.”

Morgan

“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.”

Kavya Poornima Balajepalli

“Stop comparing yourself with anything and everything. Everyone’s experiences are unique in their own way. “

Ashley Stuart

“Sharing my experience with others with the same condition offers a sense of familiarity and commonality to us.”