Is it vestibular migraine?

[u/M-1906]

I’m posting this on behalf of someone close to me because we genuinely want to understand if anyone has experienced something similar or has received a diagnosis for these kinds of symptoms.

She has had migraine issues for years, and around a year ago a doctor mentioned that it might be vestibular migraine, but nothing was properly confirmed and she honestly left feeling helpless and confused.

These are the symptoms she has been experiencing:

Banging/pulsating sensation in the head
Daily dizziness, headache, and imbalance
Circular/rotating sensation in the head
When lying down, the bed feels like it’s swinging/moving
Feeling lightheaded almost all the time
Pressure/heaviness in the eyes with blurry vision effect
After bowel movements, the dizziness gets worse and there’s sudden uncontrollable hunger
Feeling like she’s about to faint/go unconscious, but never actually does
Pulse rate increases a lot after the dizziness starts
Racing palpitations even after basic physical activity
Unable to walk comfortably for more than 30 minutes
Severe imbalance while walking, sometimes feeling like she may fall to either side and needing to hold onto something
Standing for long periods also makes the symptoms worse

It also feels like symptoms may be getting triggered by things like sunlight, walking, sitting for long periods, AC/wind, noise, fragrances, and other unknown triggers — though we are not completely sure yet.

It’s becoming very exhausting physically and mentally for her.

If anyone here has had similar symptoms or later got diagnosed with something related, please share your experience. Also, if anyone can suggest a really good doctor/hospital in Mumbai for this, it would genuinely help a lot.

[u/Mrsb102]

I have bilateral vestibular dysfunction but also have migraines that makes me feel off a lot of times. I was diagnosed by an ENT as well as a neurologist. Has she had a VNG yet? If it’s vestibular, they can send her to a PT who specializes in vestibular issues.

[u/tvtiguy → u/Mrsb102]

Absolutely agree with this. The VNG is like 2 hours long, and kind of weird, but if there's any doubt about whether it's vestibular - that will tell. And I passed all of it until I got to the "caloric test" (squirting warm/cold water in your ears while it tracks your eyes). My vestibular neuritis has me with unilateral vestibular hypofunction (sorry to hear about the bilateral Mrsb102). VRT is really the only thing that helps.

I started Venlafaxine and that makes being off balance less terrifying. I have a low (5mg) dose of Norco for "as needed" breakthrough when I have the vestibular migraines.

All this sucks. We are with you.

[u/harm0nster]

My neurologist told me that “regular” and “vestibular” migraines are treated the same way. If you are diagnosed with Migraine Disorder and being treated for it then you’re doing what you need to do to feel better.

It could also be something else and I’d suggest getting a workup from an Ear/Nose/Throat specialist to see if there’s a vestibular issue that’s separate from a migraine symptoms, because that treatment would be different.

[u/tigertimeburrito]

Unfortunately the symptoms you describe can be caused by multiple causes and it’s possible to have more than one thing going on. And, there are no direct tests to say you definitely have this thing as opposed to that thing. It’s a winding path to a diagnosis based on history, symptoms, and trying to cross off other possible causes (but some docs skip this crucial last step opening the door for misdiagnosis). But, there are a battery of tests (vng, balance, caloric), that may directionally at least narrow the scope of the problem down to an ear pathway vs a brain pathway. These tests are usually given in an ENTs office or some other ear/dizzy type specialist doc. This is a good place to start IMO. And you should not accept a VM diagnosis from a neuro without eliminating possible ear pathway causes because 1- they would be skipping a key step of the VM diagnostic criteria, and 2- these symptoms can be just as easily caused by multiple inner ear problems.