Just coming home from Mass Eye and Ear with a MAV diagnosis, from a Highly regarded ENT doctor.
But last month I met with a Neurologist who said I definitely didnt have migraines.
How do you determine who is right? And which path to follow?
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welcome! well can you tell us more about your symptoms?
What is the alternative diagnosis from the one that told you that you don´t have migraines? I think it is important that regardless of the diagnosis, that they give you a plan to control symptoms. On the other hand, accepting the diagnosis and following a plan for recovery is a good start.
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I accept the new diagnosis (it’s been my working diagnosis for 2 months).
I first presented with falling over to right and facial droop. Quickly followed by brain for and vertigo. Vertigo resolved with PT, but have constant disequilibrium, brain for and light sensitivity.
Neurologist believed it to be sinus issue and prescribed Meclizine, which was awful. My PCP took me off that and prescribed prednisone. No relief.
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Well yes, it sounds like migraine. Look at the welcome page here to read info. There are lots of symptoms, but also treatments. Did the new neuro give you any medication plan? or other? Migraine diet, magnesium, exercise, sleep hygiene are also good steps.
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I am already on propanalol and supplements. We discussed sleep and diet and most importantly journaling my findings, which I’ve been doing since my first episode.
So hopefully I am on the right track!
Than kn you!
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Definitively on the right path! You will find a lot of support and info here, so keep in touch. Wishing a quick recovery!
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Thank you so much!!
Hi Laura! I know that MAV sometimes mimics sinus issues, but specifically what caught my attention in your list of symptoms that I don’t believe fits into a sinus issue category is “light sensitivity”. Not every single person with MAV has photophobia but many do. This is a quote from Dr Goebel “The million-dollar question is, ‘Are you photophobic with your dizzy spell?’, he told listeners. If the answer is yes, give the patient a migraine-elimination diet and a six-week trial of prophylactic medications“
Here’s the full article that is in ENT Today magazine.
https://www.enttoday.org/article/migraine-associated-dizziness-is-elusive-to-diagnose/?singlepage=1
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Thank you!!! This is a great help!!
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Let’s be careful with terminology? Sounds like MAV?
MAV and migraine are associated but not the same thing. It’s very possible migraine is just one part or even just an outcome of MAV and (imho highly likely) not its entire aetiology (it’s fairly obvious that most people who have migraine don’t have MAV, for example). There are some people who passionately believe MAV is a form of migraine. I suspect it’s more complex than that. This controversy may explain the differences of opinion you are already witnessing. I had 4 opinions and they all differed in some way. I even got different diagnoses.
In any case @Anjawrenn in answer to your question I would definitely explore the MAV treatment protocol and work with your ENT accordingly. Once you’ve ruled out alternatives like Menieres and Neuroma there are few other common diagnoses for chronic dizziness.
Unfortunately the science does not yet explain things down to a molecular level here.