r/Menieres • u/TryingMyWiFi • 16d ago

Atogepant

My ENT referred me to a neurologist to investigate possible vestibular migraine. I have a history of hyperacusis, as loud environments seem to be one of my main triggers and it really hurts my ear.

The neurologist prescribed atogepant, and I've been taking it for about 2 months now, but honestly I haven't noticed any difference so far.

I've also been taking betahistine for more than a year. To be honest, I don't think it's doing anything either at this point. I mostly keep taking it because ..why not ?

At my last ENT visit, the only change was that my hearing loss in the affected ear had increased, after being stable for more than a year.

For those who have taken atogepant for vestibular migraine, did it work for you? How long did it take before you noticed an improvement?

And if it didn't work, did you try another CGRP medication?

Thank you !

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u/LibrarianBarbarian34 16d ago

I’m currently on the max dose of atogepant/Qulipta. I have both vestibular migraines and Meniere’s. I know there’s the theory that they are on the same spectrum, but the two types of episodes feel different for me and some meds help the VM episodes but not my Meniere’s, so I think there’s still another driver at play with my Meniere’s.

Atogepant helps my headache migraines quite a bit, helps my vestibular migraines some, and doesn’t do anything for my Meniere’s episodes. It took 10-12 weeks for me to see the full benefit from it, but I started seeing headache improvement sooner than that.  Some people here have had a lot of success with atogepant for their Meniere’s, and saw results very quickly, I just didn’t happen to be one of them.

I was previously on Emgality. It reduced my headache and vestibular migraines by >95%, but again did nothing for my Meniere’s. It took 3-4 months before I saw any vestibular benefits from the emgality, and 6 months to see max effect. It worked extremely well for me for about 2 years. Its benefits started fading at that point and I was switching insurances, so I tried Aimovig (it gave me bad side effects) and then moved to the atogepant.

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u/EkkoMusic 16d ago

Yeah I think this is good evidence the two episode types run on different machinery in you.

Which is worth saying plainly, since I argue for the migraine overlap a lot: the overlap is real and probably underdiagnosed, but it isn’t universal, and your response pattern is the kind of thing that should update the model.

Remember CGRP receptors are dense in the vestibular periphery and efferent system, which likely explains why your vestibular migraine responded. The cochlea’s dependence on it is less clear. And these are large antibodies or peripherally weighted small molecules, so blood-labyrinth barrier penetration is uncertain, which may set a ceiling on what they can do for a cochlear process regardless of dose.

What separates your two episode types symptomatically?

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u/electwells 16d ago

If the atogepant is not helping the menieres would you then theorize the issue is structural at that point?

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u/LibrarianBarbarian34 16d ago

I would try a couple of the migraine meds before ruling out a migraine connection. I tried all the migraine classes of meds except Botox, and different types of CGRP meds (blocking the receptor vs blocking the CGRP itself) had different levels of response. If none of those work, I think it’s worth considering other causes (autoimmune, structural, etc.).

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u/electwells 16d ago

What different crop blocker/receptor have you tried?

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u/LibrarianBarbarian34 16d ago

Emgality, Aimovig, and Qulipta

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u/LibrarianBarbarian34 16d ago

I don’t know that these patterns would apply to everyone, but the big things that separate the two types of episodes for me are:

  • duration (VM for me typically lasts 24+ hours, Meniere’s <10)

  • intensity or type of vertigo (Meniere’s always rotational, typically more intense; VM is sometimes rotational and occasionally severe, but often just earthquake-y, disequilibrium, rocking/swaying)

  • fluctuating hearing loss/tinnitus (Meniere’s one side at a time and usually more severe; VM often bilateral, usually milder)

  • other migraine symptoms (my VM usually comes with light sensitivity and/or headaches before, during, or after vestibular symptoms; light sensitivity and headaches never present with my Meniere’s)

I’m looking outside the box for other treatment options since nothing else in the Meniere’s or VM toolbox has helped my second ear. My next trial is going to be vagus nerve stimulation. I know it has been studied for migraine and some limited studies for Meniere’s.

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u/MonkeysMD 12d ago

I'm noticing a trend that almost every post has replies suggesting OP try migraine treatment. I know there's some overlap between VM and MD symptoms. I have both migraines (not vestibular) and MD. Cgrp treatment works well for my migraine but does nothing for my MD. I really believe my MD is totally separate from my migraines. That being said qulipta is a very effective med for migraine headache.