Hi everyone! My doctor prescribed me Bydureon, an extended release form of exenatide for IIH. This post is my experience after my first week!
My history: I was diagnosed in April 2020 with grade 1 paps and opening pressure of 26. By April of 2021 I had grade 3 paps and an OP of 38. I have tried Diamox, methazolamide, Lasix, and Topamax and had to discontinue all due to severe reactions. I have lost 50+lbs without a significant change in symptoms. I'm currently at 160lbs. I also have PCOS and insulin resistance. I have experienced migraines at least twice a week for a year or so.
My experience: Bydureon is an extended release form of exenatide and only requires an injection once weekly, as opposed to Byetta which is twice daily. Last Thursday when I had my first injection, I had been experiencing a severe migraine lasting over 36 hours. Within an hour of the injection, my migraine was mostly gone with a little bit of pain around my temples. After 3 hours, all my pain was gone. I usually experience nerve pain in my arms when I have high pressure and that went away completely! The following day a storm front moved in which is normally a trigger for a major migraine. All I felt was slight pressure behind my eyes! I was able to go to work without needing any painkillers! My migraines have been mostly gone the whole week, and when I took my shot yesterday all my pain went away 
I still have to stay away from my migraine triggers, but the symptoms of high pressure (tinnitus, neck/shoulder stiffness, eye pain) are gone.
My doctor told me that a side effect is constipation, and she wasn't kidding! I have also been advised by diabetes groups on Facebook to stay away from excessive carbs and to make sure I eat. I have also experienced some nausea, but Tums and plain foods help settle things. The bruises on my thigh are super gnarly, but that's to be expected from an injection.
Getting exenatide: My NO was only willing to try exenatide when all other nonsurgical options failed. She referred me to endocrinology but the referral was rejected because I'm not actually diabetic. My primary care was willing to prescribe the Bydureon after checking my labs to test my thyroid. Shockingly, my insurance did cover it, but only because I had previously taken Metformin for PCOS. It can be very expensive without insurance and may require prior authorization.
Please note that exenatide is not FDA approved to treat IIH, and there has only been 1 study so far with a small sample size to test its efficacy. Invex Therapeutics does have a clinical trial planned for the United States but I'm not sure if they're enrolling yet.
I'm happy to answer questions about my experience in the comments!
And responses below
I'm SO happy to hear this!!! I don't know if it's due to acetazolamide or gestational diabetes, but since having my baby I've been having elevated 2 hour blood glucose. I'm on metformin right now but I have seriously wondered if stopping acetazolamide would fix my blood sugar, I'm honestly scared to stop it though or try something else (like furosemide/lasix).
I check up on exenatide once or twice a year to see if there's been any approvals or updates.
Your story has really inspired me to bring it up with my neurologist. Thank you for sharing.
Eta - I'm not diabetic, I guess I'm clasified as prediabetic.
Let’s go!! Great to hear!
My insurance denied coverage but my primary care said he should be able to do a prior authorization and get them to cover becauseExenatide has been granted Orphan Drug Designation by the FDA for IIH.
Presendin is the name of the drug Invex is trying to repurpose Exenatide into.
Good to hear positive feedback about our drug
(20min delay)