The Vestibular Migraine Community

So how does anyone know for sure?


#1

A common theme I see here and other dizzy places is along the line of "I was misdiagnosed with labyrinthitis (and/or meniene’s and/or bppv and/or mav and/or pppd etc.) and I finally saw a doctor who knew what they were talking about and have now been officially diagnosed with labyrinthitis (and/or meniene’s and/or bppv and/or mav and/or pppd etc.) I personally have been “officially” diagnosed with 6 or 7 different vertigo disorders. How does anyone know which one is truly the one? Or can they all be different names for the same disorder?

Reading through a symptom list I could just as easily have MAV as I could have Meniere’s as I could just about any of them. And it’s not like the symptoms are clear cut - two people could have a totally different list of symptoms but both will be diagnosed with MAV. And meds help some of the time but other times they are useless or make things worse. So are the meds really helping or is it just coincidence? I fell hard on my forehead a month before my first bad vertigo attack (10 years ago). Is there a connection? I’m told with a shoulder shrug maybe, maybe not.

My vertigo/dizziness comes in all different forms from severe hours long vertigo where I can’t move at all to a chronic motion sick feeling to sometimes feeling great to brain zaps/mini-spins. I never had light sensitivity with a migraine headache but do with a vertigo attack. My latest episode of vertigo (after 7 years of being vertigo free) was totally different than the others in that the horrible unsteadiness lasted two weeks and this time I became extremely hypersensitive to noise to the point where I couldn’t eat crunchy food or walk and talk at the same time. Walking up and down stairs was near impossible because of the side vision going up and down. With these new symptoms does this mean it’s a totally different dizzy disorder? And when I see the ENT next week will she have any insight at all as to what’s wrong with me? Probably not.

I’ve seen neurotologists who don’t know, regular ENT’s who take a good guess, PCP’s who say MAV is a term they use when they doctor’s don’t know what is wrong, GI doctor says it’s my celiac, ER docs who say, yup, you’ve got vertgo.

Unless one has a clear cut abnormality that shows on an MRI or scan, how does anyone really know for sure what is wrong?

(sorry if I come across sounding angry, I don’t mean to, I just frustrated at this whatever disease)


#2

Most of us have been here … and the answer, I suspect, is: you don’t! :unamused:

Unfortunately, part of the challenge having a vestibular condition is the challenge of coping with considerable uncertainty - the uncertainty of what is wrong with you, and the uncertainty about when and IF you will get better. And for some people they don’t even know how they got to this point - I at least had some trauma to my ear, so that gave me (& my doctors) a huge reference point.

It helped to find a doctor who speaks my language and everything he says makes sense. He is also someone who is prepared to explain something to you and answer your general questions about the condition - as @GetBetter observed nicely: not all doctors are happy to help educate you :man_student: as well as treat your condition. I can’t get along with those kind of doctors. I guess I’m lucky going private - patients in the UK who use public health care get a very short appointment slot so there is precious little time to talk around the issues.

I guess the other main issue here is that the technology available in this wing of medicine is not yet fully developed - medicine still has not discovered the cause of Meniere’s disease, has never determined what exactly happens in a vertigo attack and the radiology is still developing :level_slider:. As a result of imperfect tests and scans which shine a light on but don’t give a totally high resolution view of the problem, diagnoses are less reliably arrived at … and a lot of diagnoses seem to depend on who you ask, so seem to be scarily lacking in objectivity!

My advice on this one is to keep going for another opinion (within reason) until you find a doctor you feel completely comfortable with.

FINALLY, unfortunately it falls to you to work out what the best treatment is … work out what works for you. There is a wealth of treatments and it really is a good idea to explore them to find the optimal relief. But you know this @bookworm, you’ve been around the block on this one, right?

I guess the popularity of mvertigo.org is partially because this subject is not particularly straightforward … so people reach out to the experience of others to help them deal with things. If this condition was really easy to deal with and easy to categorise, this website would almost certainly not exist.


#3

Turnitaround - thank you for your insightful response. It’s unfortunate that so many people suffer from vertigo and the medical personnel who treat us can’t agree on so many facets of this. It’s hard to move ahead and figure out what treatment is best for me when I don’t know what has caused it in the first place.

It could be so many things - something I’m eating, a fall on my head several years ago, maybe some strange parasite sitting in my brain ready to pounce when I least expect it, heart problem, allergy, weather, emotional distress, hormones, arsenic poisoning, undiagnosed lyme, vitamin/mineral deficienty/excess, migraine, too much of something, multiple sclerosis, not enough of something else, lactose intolerance, gluten contamination, voodoo dolls and then the latest, earwax which may or may not be the cause of my last attack.

What I’m questioning is why are some people so confident and sure of their diagnosis. Is it because they are so trusting of what the doctor says that they will believe anything or has the doctor really and truly found the one and only cause of their vertigo? I cannot get definitive answers at all. Even trying to get a diagnosis of migraine headache years before my vertigo started was a dead end as my PCP said I definitely wasn’t having a migraine headache and the neurologist said yes, it’s definitely a migraine. aarrrrggghhhhhhhhh :scream:


#4

As James said, there’s a lot we don’t know about the brain and a lot they’re still learning. Here’s an example - this story caught my eye the other day: