The Journey to Vyepti
It's been a while since I've posted here. It's also been a while since I've found any success with treatment since I stopped Topamax back in 2020.
My migraine treatment journey
A little backstory - I was put on Topamax after trying a couple of medications previously that I had little to no success with, but the first year of Topamax was working quite well for me, and side effects were minimal. It wasn't until I began taking doses above 75mg that the side effects started to become very prominent. Long story short - I suffered major vision changes (glaucoma), memory/cognitive issues, and severe hair loss.
2021-2022: Trying multiple medications
At this time I was fully off Topamax and got into a neurology clinic that worked with me and wanted me to start fresh. After a couple of failed medications due to an allergic reaction, we decided to try Botox which reduced the intensity of my daily headaches for 6-8 weeks, migraines were still pretty brutal though. At this time I was still able to take Rizatriptan or Ubrevly for emergencies and Motrin if needed but was advised to stay away from it daily. During this time I was in a brutal cycle of taking Motrin too much, going through rizatriptan-like candy and was just overall miserable with a very low quality of life. We even mixed in gabapentin and some steroids to try to stop the migraine attacks.
2023: Discovering Vyepti
This is where Vypeti comes in! This was the year of nerve blockers, haha. I kid you not I was having nerve blockers done every 1-2 weeks just to get by and be able to function. I was also tested for a CSF leak because of the weird new symptoms I was having along with my migraines/headaches. Though that test came back clear, I was still struggling with some of the symptoms that point towards a leak (we don't have answers on that yet).
Community Poll
Have you tried Vyepti?
At this point, I was exhausted. We were going to try Qulipta but my insurance wasn't a fan, so we tried for Vypeti and, wow, what a game-changer for me! My first infusion at 100mg gave me the most peaceful 6 weeks of my life. Unfortunately, this drug can only be administered every 3 months, so it's been an intense month. My second dose, which will be 300mg, is in a couple of weeks (so grateful!). I've experienced the congestion side effect for sure and I've been dealing with some intense nausea with my migraines and without them. Also, I'm pretty sure the additional symptoms I'm experiencing right now are more related to my migraines/headaches (difficulty concentrating, fog, and vision/light sensitivity).
Where I am today in my migraine treatment journey
I'm hoping my next infusion will last a bit longer and continue to be a successful treatment for me. I spent most of 2023 wanting to just give up. I couldn't believe the number of nerve blockers, abortives, nausea medications and caffeine, goodness, the caffeine haha. I was taking it just to get by. This last month has been brutal, but I'm hopeful. My first infusion gave me a peak into how drastically my quality of life improved and that's what I'm holding onto.
If you read this, thank you! I hope everyone out here can find success treating their migraines/headaches too and that our quality of life gets so much better. ❤️ I would not wish these darn things on anyone, I doubt any of us would. Hang in there, I did and I'm so grateful I did.
Community Poll
Do you feel comfortable advocating for yourself to your healthcare provider?
Join the conversation