I’ve been noticing a lot of new folks are coming to the site. Most of them ask a lot of the same questions. Do you suppose we could have a FAQ section pinned to the top? One of the old articles I read from Scott (?) provided a very good run down of what MAV/VM is. It would also be helpful to have a co-morbidity section that spelled out all of our acronyms (SEH, BPPV, etc.) and the big med and supplements polls and maybe the list of common specialists and tests we all seem to get plus links to VEDA and other useful sources of info. I notice you, @manatee (Anna) and @GetBetter (Vignesh) link to several of the same articles regularly. Those would be good links to have in the FAQ section.
In less random order, we could have pages that linked to:
What is MAV/VM and what are the common symptoms?
Other common diagnosis that are similar or often in combination with MAV
The path to a diagnosis, both specialists (GP, ENT, Neuro, etc.) and tests (MRI/MRA, audiometric, vestibular, etc.)
That’s a good idea guys. I’ll see what I can do, though this is a significant undertaking and and not without a potential dilemma.
To be blunt, whilst I would endeavour to be diplomatic and uncontroversial I will equally not promote unabashed dogma which is over simplistic about this condition (otherwise we’d be no better than the people in the 80’s who told everyone they had PLF or prior to that that they had Menieres … and oh how convinced they were at the time!).
Any such any intro would not assume an aetiology, it will just remain ‘open minded’ to avoid controversy (which wouldn’t be appropriate as an intro, obviously, and too much for no-doubt anxious newbies.)
We also have several SEH members (who often, like me, have identical symptoms and respond to … identical treatment … and even have had MAV diagnoses along the way) so will see how we can accommodate those in any introductory post.
It should focus on uncontroversial facts and the well-established, effective treatment protocols. I could aim to reach compromise on content & language as necessary with you all before publishing as I strongly believe in this being a resource ‘by the community for the community’.
The focus on this site though, I believe, should remain it being a discussion forum and not a ‘wiki’. There are other sites that focus on that, including Hain’s and vestibular.org.
So probably doable … but would you be happy with that?
Vestibular migraine(VM/MAV)originates in the brain and it is a neurological disorder.
PLF is a separate ear condition.
SEH is a separate ear condition.
Yes people can be misdiagnosed. That does not mean in any way VM/MAV does not exist.
James, are you going to claim you know brain anatomy to say it can never cause vertigo?
I can point to a zillion posts here where the experts have spoken Dr.Baloh, Dr.Hain , Dr.Rauch. All of them said the same thing that migraine causes vertigo. I would trust a MD, Phd who is an expert in this field any day. There is no controversy other than one person’s disbelief.
There is a difference between being passionate about a subject and being passionate about one’s opinion.
Again i am not saying this site should cater only to VM/MAV. All conditions are welcome. Let the users form their conclusion.
Absolutely not, but then again I see no conclusive evidence to support it either. It’s just an opinion.
Sure we have scans that show the activity of a migraine, big deal. But nothing to prove either way that there was nothing going on in the senses to trigger the migraines?
We now have emerging evidence of Hydrops in VM patients, with some neurologists claiming this is somehow brought on by VM … we will see!
I’m sure you can, it’s current dogma, no argument there.
I’m sure there were plenty of supporters of Dr. Black too …
That certainly helps prove the meds work … (btw point me to someone who is truly 100%?) … again no argument there, never had an issue with the treatment and very curious to know why it works (albeit have my theories).
The fact that meds help does not rule out other things going on, though. The meds may be making up for sensory instability that would otherwise cause issues (were it not for the meds).
Fantastic! … I wish we saw that on mvertigo on a regular basis … can you remember the last time someone reported 100% on here? Even well before my tenure I couldn’t count them on one hand.
But again, evidence of 100% doesn’t establish root cause and an aetiology, but it does prove effective treatment!
This is very true!
But by the same token, if they come off those drugs do they regress? If so, they are not rid of it either … (but have found an effective protocol, thank goodness)
And you might be able to explain some of this with degrees of the condition …
For my part, with only my n=1, I think I have the neurological, and potentially metabolic, genetic condition migraine, with the unhappy subset of it being MAV. Scott’s right, migraine is a sensory disorder of the signals in the brain. For certain I have vestibular issues that are inner ear related. I’m willing to accept these may be two related conditions much like my frequently co-occurring PCOS and hypothyroidism. Two separate disorders with overlapping but not perfectly correlated patient groups. I’ve had way too much aura of too many types to ascribe it all to a mechanical inner ear issue. You can’t have scintillating scotoma without cortical spreading depression - a migraine aura. I can’t see how SEH, BPPV or any other inner ear issue alone could cause that.
Ok, let me take a different tact. I don’t really care whether SEH is the same thing as MAV and I’m guessing a huge percentage of the folks that land here don’t either. When I’m suggesting an introductory FAQ, I’m talking about newbies who come in with the same set of general questions, often full of anxiety and terror:
What’s happening to me?
What are the symptoms of MAV/VM (with or without but often co-diagnosed with SEH, PLF, BPPV, vestibular paroxysmia) and are they similar to the awful thing that’s happening to me?
Is it real because I’m pretty sure I didn’t imagine it?
Can it be treated? How, and with what?
What are the doctors I should see and the tests I can expect?
Is there hope? Or should I just try to fall somewhere between resignation and acceptance?
These are the questions new folks care about. We can get into the deep science, and most of us won’t, later. Us geeks can argue about it forever, but that won’t help as many people as we could by just giving them a common starting point that covers the basics.
Scott’s 2014 article was by far the best thing I’ve read on any site. It answered all those questions. I didn’t care about etiology and splitting fine hairs then and I don’t really care now. If you’d put a huge disclaimer across it that said this is anecdotal, I would have been ok with that, particularly if I was then given links to other sites.
I’ve already read the other sites. I know what my doctors said. Is it my metabolism? Probably partly. Is it my neurology? Definitely. Is it my inner ear? Yep. So what do I do about it to get my life back? I suspect the only real question most people care about is that last one.
Guys (looking at you @GetBetter@flutters and anyone else) , putting my contraversial opinions aside for a second, do we think this guide needs updating in any way? (save for perhaps the year!)
That’s very big of you. Thank you. MAV provided me a forced error at work that’s months in the making. (I dropped the ball, kicked it under the bed, took three months to feel better enough to go looking for it.) I need the next 1/2 hour to figure out how not to lose this potentially major client before I even begin working with them. After that, I’ll look again at Scott’s article.
My first thought, as always with me and my controversial thinking is to include a little bit about the newer research into sodium and glucose and the metabolic aspects of migraine.
James, thanks for asking. Let me find the hain pdf sent to me with all the vestibular tests. Will be good to add the tests. While the treatment can be conservative no reason NOT to find out what is wrong with inner ear. Will reply in detail once off work
Hain-vestibular-tests.pdf (283.8 KB)
This PDF has most of the vestibular tests at super specialty clinics. It would be good to add this to the Migraine surivial guide so when folks come here wondering what kind of testing is available for inner ear disorders, it will be helpful.
is to include a little bit about the newer research into sodium and glucose and the metabolic aspects of migraine.