On March 25th, 2026, IIH-Hub.com held a live webinar to discuss what it is like for those who have IIH and their experience using GLP-1’s.
We hosted 2 patients who have IIH, currently receiving treatment for it, and are currently using a GLP-1 to manage their weight.
Jim is a male nurse practitioner who was diagnosed in 2022. He first experienced symptoms of 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, scapular pain and headaches. After a long and arduous medical journey, and a lot of self-advocacy, he found a provider who listened. He is currently on a GLP-1 and states his side effects are mild but are mainly positional in nature and experiences heartburn which he takes cimetidine with relief.
Jim also shared with our community his experience of asking for a prescription for a GLP-1, to his out-of-pocket costs and insurance coverage changes. He is currently using Lilly Direct to receive Zepbound and has been on it for 12 weeks with about a 20 pound weight loss. If you would like to read Jim’s story, click here.
Jessie is a perimenopausal female who has been diagnosed since 2023. She was told once she received her IIH diagnosis, she needed to lose weight. She gained weight despite her rigorous exercise regimens only to find that she benefited from treatment of her hypothyroidism and hormonal imbalances. Once she found the right provider, she underwent neuroimaging and was found to have bilateral venous sinus stenosis and had stents placed. Since the summer of 2025, she has been on a GLP-1 which has allowed her to decreased her diamox doseage. She also uses Lilly Direct to receive her medication. Her symptoms on Zepbound are dizziness, dry mouth, constipation, and occasional nausea that she describes as manageable. If you would like to read her IIH journey, click here.
We also heard from Ashlee, an IIH patient from Australia. She briefly shared her journey of having transient blindness at a young age that ultimately led her to being emergently worked up, diagnosed, and treated for IIH. She states she has battled with her weight since early childhood and has described similar healthcare challenges as the US. She recently qualified for bariatric surgeryAn invasive procedure where the stomach is surgically manipulated to assist with weight loss. It is also known as weight-loss surgery. Click the term to read more and has lost about 100 pounds and is enjoying her life. If you would like to read her journey, click here.
Some questions that went unanswered due to time constraints were:
- How does GLP-1’s affect CSFFluid that is made by specialized cells in the ventricles of the brain. Click the term to read more in those with IIH. You can read a recently published article here.
- What effects do GLP-1’s have on those with IIH. You can read a summary of a recent article here.
We thank our IIH community for your attendance and active participation in this webinar and thank you for sharing your transparency into your medical journey, allowing others to know they are not alone.
