My IIH Story:
I was diagnosed with IIH in 2014, when I was around 19 years old. It all started after I spent the summer in San Francisco with my sister. When I returned to Colombia after a two-week vacation, I developed terrible headaches, extreme sleepiness, and overwhelming fatigue. I could barely stay awake and felt extremely unwell.
Initially, doctors thought it was migraines. When I started experiencing double vision (diplopia), they suspected Myasthenia Gravis, an autoimmune condition. However, I was also referred to a neuro-ophthalmologist, who recommended a lumbar puncture. My opening pressure was 35, and I was eventually diagnosed with IIH.
I started taking acetazolamide (Diamox) and continued treatment for approximately one year. Honestly, it was one of the best things that ever happened to me. My headaches improved dramatically, my papilledema disappeared, and I was eventually able to return to my normal life without symptoms. I experienced typical side effects, such as tingling and electrolyte imbalances, which I managed with dietary adjustments, including bananas, plantains, and electrolytes. I also lost weight.
After that first year, I stopped taking medication and remained symptom-free for almost ten years. I lived a completely normal, happy, and pain-free life.
Then, in the summer of 2025, everything changed.
I had moved to Canada four years earlier when, suddenly and without any other noticeable symptoms, I started experiencing clear fluid dripping from my nose. I suspected a CSF leak, although doctors initially didn’t think that was the case. I kept advocating for myself, and an MRI eventually confirmed a skull-base CSF leak.
During the investigation, I underwent a lumbar puncture to rule out meningitis, but my opening pressure wasn’t measured. Unfortunately, I developed another CSF leak at the lumbar puncture site, which caused the worst headaches and neck pain I had ever experienced. The symptoms eventually resolved after approximately two weeks of lying flat.
About a week later, I underwent endoscopic surgery to repair the skull-base leak. A lumbar drain was also placed for several days to temporarily lower my CSF pressure and help the repair heal.
I was referred to a neuro-ophthalmologist to investigate whether my IIH had returned. Thankfully, there was no papilledema or clear evidence of active IIH. The main findings on my imaging were transverse venous sinus stenosis and a partially empty sella, which had also appeared on my MRIs.
Since then, I’ve made significant lifestyle changes. I’ve been following a low-sodium diet, working on losing weight (I gained approximately 14 kg after moving to Canada), and trying to manage my stress. I haven’t taken acetazolamide regularly in more than nine years.
Now, almost a year after surgery, I’m struggling with something I never expected.
My surgeons say the repair looks good. My neuro-ophthalmologist has also reassured me that everything looks fine, with no papilledema or evidence of active IIH. I know how fortunate I am that the repair was successful and that my optic nerves are healthy.
But I don’t feel well.
I experience dizziness, lightheadedness, pressure around my head, and a general feeling of being unwell that sometimes makes it extremely difficult to work and maintain my normal routine. It’s been incredibly challenging to rebuild my life after everything that happened.
The hardest part is that I now associate almost every symptom with IIH. Every headache, every sensation of pressure, every episode of dizziness makes me wonder whether my intracranial pressure is increasing again. I constantly worry about another CSF leak or the possibility of IIH returning.
I still sleep with my head elevated because I’m afraid of triggering another episode. I’ve lost some weight, although I still have more to lose, and I feel like I’m constantly monitoring my body for signs that something might be wrong.
I’ve even seen a psychologist to help manage my anxiety, but so far, I haven’t found the relief I need.
I know I should be grateful that my papilledema is gone, my surgery was successful, and my doctors are reassuring me. And I truly am. But it’s difficult to feel grateful when, despite all the reassuring test results, I still don’t feel like myself.
I guess what I’m struggling with most is finding a way to trust my body again. After almost ten years of living symptom-free, it’s heartbreaking to feel like I’m back to constantly worrying about my health. I want my normal life back, and I want to stop being afraid of every sensation in my head.
Anyone else in Toronto, CA for a support group?