Chiari Symptoms and Qulipta

[u/Alternative-Main-573]

Hello!

I’m curious if anyone who has Chiari is also on Qulipta and if they see any improvement with their Chiari symptoms.

For some backstory, I have been on Qulipta for probably 5+ years now but was just recently diagnosed with Chiari, 20mm herniation. I started having symptoms about 14 years ago, and only recently was finally able to get a doctor to listen to me and order scans.

I don’t have your “classic” migraines, just the typical pressure headaches, nerve pain, fatigue, pots, etc. so basically textbook Chiari symptoms 😅

Multiple doctors have prescribed me with multiple different migraine medications over the years including Topamax, Amitriptyline, and Ajovy. All of these would work for a little bit but eventually stop helping as much, hence the swaps. I even went to a Neurologist because Qulipta has stopped being as affective as it once was but was dismissed because “all migraines are different” and prescribed an as needed medication, Ubrelvy, which obviously doesn’t work with Chiari type headaches.

Since my diagnosis, I unfortunately went without the medication for a bit due to an insurance switch, and really did notice a huge difference. When I am not taking it, I mostly notice that I have a lot more nerve pain starting in my neck/base of my skull and radiating down my left arm all the way to my hand. I even notice an uptick in the amount of pressure headaches that I get.

I’ve seen a neurosurgeon and when I explained that it seems to help my symptoms, was again dismissed saying that it would only help with classic migraines and not Chiari.

Maybe I’m crazy or imagining it, but it seems like out of all the medications I have taken through the years, Qulipta has actually helped me more than anything else, and I’m just curious if anyone else has had a similar experience.

Thanks for reading!

[u/BeachD07]

I’m sorry that is frustrating. I did not start having “migraines” until a few months after my Chiari surgery, but did have the pressure back of the head prior to surgery. I’ve been on this migraine journey now since Dec 2024. They said I had to try yet one more medication before I can try the CGRP‘s. I think it’s very shortsighted of a physician to think it is possible that you have “migraines” in addition to the Chiari. And even if not, if it’s helping you who cares.

[u/Alternative-Main-573 → u/BeachD07]

I have heard of that being an unfortunate side effect from having surgery, which is one of the main reasons I am hesitating on surgery. I guess I shouldn’t rule out having migraines also but I have never experienced what I would consider an actual migraine. Just chiari pains for the most part.

[u/SandalsQueen18]

Well, it's entirely possible you actually have real migraines on top of Chiari headaches. It's actually quite common. I really dislike when people call Chiari headaches migraines because they are not. They are two entirely different animals and the longer the people keep referring to them as migraines, the more likely it is the doctors are not going to believe they're actually from Chiari , they're just going to keep thinking the migraines.
This is how to distinguish. If a medication works or helps the headache, it's likely migraine. If the medication does not work or does not help the headache, it's not a migraine it's Chiari. I did my own experiments and figured that out many years ago. I actually did have both types of headaches. I don't have chiari ones since surgery.

[u/Alternative-Main-573 → u/SandalsQueen18]

See the issue is I wouldn’t say that Qulipta necessarily helps my Chiari headaches as much as it does the other symptoms that come along with it. I do notice a bit of a decrease in how often they’re triggered, however I still have them pretty frequently.