When I think about my introduction to IIH, I can’t tell the story without obesity and weight loss at the very center. As a newly diagnosed patient, what I heard on repeat from specialists was that IIH and obesity go hand in hand, and that weight loss is the treatment. Today I know there’s more nuance than that, but at the time this seemed like the one thing doctors agreed upon.
The first words out of my neurologist’s mouth after revealing my diagnosis were: “I see in your chart you’ve recently gained weight.” Despite findings on my imaging report that I thought deserved further evaluation, like empty sella and bilateral venous stenosis, weight loss remained the focal point of subsequent visits. One specialist said, “Lose weight, then we’ll look at other options.” Another asked, “So, what’s your plan for losing the weight?” The implication was almost that I’d caused my IIH and it was on me alone to correct it.
As someone who grew up scrappy and athletic and went on to run half and full marathons into middle age, this fixation on my weight was uncomfortable and distressing. I’d only recently joined the “obese” row of the BMIA value derived from the mass (weight) and height of a person. A healthy range is between 18.5-24.9, overweight is defined as 25-29.9 and obese… Click the term to read more chart when chronic symptoms appeared: fatigue, brain fog, hot flashes, and rapid weight gain totalling 60 lbs in less than a year. Eventually I learned that I’d been experiencing perimenopause and hypothyroidism. In my mind, it wasn’t as simple as “just lose the weight,” but I wasn’t offered any strategy beyond “Eat less, move more” (which I was already doing).
The weight gain the neurologistMedical doctor who diagnoses and treats nonsurgical issues related to the brain and nervous system. Click the term to read more saw in my chart was indeed timed around the onset of my IIH symptoms. I was prescribed Diamox, which made me extremely sick, and I lost 20 lbs. I saw no relief from symptoms and wasn’t convinced weight loss was a useful or sustainable treatment.
I eventually found a trusted team who evaluated and treated my bilateral stenosis with a stent, which relieved my symptoms for a while. When painful flares returned and every other option was exhausted, my team recommended tirzepatide, or Zepbound. The science nerd in me found the recent studies pointing to tirzepatide’s reduction of CSFFluid that is made by specialized cells in the ventricles of the brain. Click the term to read more production and intracranial pressure compelling and worth exploring. It wasn’t just about reducing BMI, but addressing the other contributing factors.
In the summer of 2025, I kicked off my Zepbound experiment. I was taking 750 mg of Diamox at the time, with a goal of tapering off completely. Here’s what that looked like:
Insurance Prior Authorization
My first hurdle was obtaining a prior authorization. Employer-sponsored insurance formularies vary widely, and in my case, neither IIH nor obesity were listed as approved diagnoses for Zepbound. Fortunately, I had a prior diagnosis of obstructive sleep apnea, and after a couple of weeks, my prior authorization was approved and insurance covered most of the cost.
Cost
Without insurance, Zepbound self-inject pens retail for around $1,000/month. Through Lilly Direct, a self-pay program, vials are available for between $229–$449/month. When my employer stopped covering GLP-1s in 2026, I switched to Lilly Direct and learned to give myself injections. This can still be cost prohibitive, and some people opt for compounded alternatives. I’d recommend consulting your doctor on that decision.
Support
I turned to Reddit for moral support. Shout-out to the GLP-1 and Zepbound subreddits for helping me muster the courage to use syringes and navigate side effects. I found fellow IIH’ers there too. These groups provided validation for my choice not to share with family or friends that I’m taking a GLP-1. Others there understand the feeling of overexposure that comes with people having opinions on your chronic health conditions, and the need to keep some details private. I’m not ashamed of taking this medication, and happily share in safe spaces and encourage others.
Side Effects
In the beginning, I was prepared for the worst, but I felt mostly fine. Side effects were manageable: some dizziness, dry mouth, constipation, and occasional nausea. Increasing fiber, staying on top of water intake, and prioritizing rest helped. My doctor proactively prescribed Zofran for nausea, which worked instantly.
There was one month, after moving up to the 12.5 mg dose, where I experienced persistent headaches. I was afraid it had triggered an IIH flare. I wanted to stick to the recommended dose schedule, but it was too much. I resumed the 10 mg dose and have stayed there for the past three months. This seems to be the lowest effective dose for me, and I plan to adjust the dose only when needed. The highest dose is 15mg, so there is still plenty of room to adjust upward.
Results
Everyone talks about food noise, and I didn’t understand it until it was gone. For me, it was the voice of my cravings. Sweets became unappealing. That, combined with a diminished appetite, made it easier to plan meals and snacks intentionally: protein, fruits and vegetables, smaller and more frequent portions. It’s been almost 7 months, and I’ve lost 40 lbs.
As for my IIH symptoms, I’ve maintained a steady absence of them. Occasional pulsatile tinnitusA whooshing or throbbing noise heard in one or both ears that can range from annoying to debilitating. Highly associated with venous sinus stenosis. Click the term to read more or pressure with weather systems still pop up, but they’re short-lived and do not disrupt my life like before. I’ve tapered down to 375 mg of Diamox daily, and at my last visit with my neuro-interventional team, I “graduated” from every-6-month follow-ups to as-needed. I still see a neurologist twice a year and a neuro-ophthalmologistMedical doctor who specializes in neurological conditions that affect vision. They can diagnose and treat conditions related to the optic nerve. Click the term to read more three times a year, but those visits have been uneventful and will likely become less frequent.
Next Steps
I plan to continue Zepbound at the lowest effective dose for as long as I can afford to. Eventually I may space out doses or taper completely, but for now I’m enjoying a symptom-free, active life.
Living with IIH feels like being part of an experiment none of us signed up for. I’ve had to become an informed self-advocate and stay open to challenging my own assumptions, remaining flexible when things change. I’d encourage any IIH patient experiencing similar challenges to explore GLP-1 options with your doctors. It’s a big decision, but it could offer life-changing results.
