Well…that was quick 
I am scheduled to see Dr. Baloh (from what I hear, the Godfather of MAV on the west coast) at UCLA.
My appointment is 3 weeks from today…January 26th. Fly out of Spokane at 5:00 am (ugghh) for a one day appointment…fly back that night.
Any pointers/recommendations you guys want to give me prior to my visit?
I know my time will be limited , so I plan on organizing my medical history on a one/two page sheet(s).
Thanks and wish my well
Great news.
Would you consider recording the appt for yourself on an Iphone if you have one? Afterwards you can relisten when you need to revisit his advice and even dot point what you’ve learned from “da man” and write it all down here for everyone to read (minus your personal stuff of course).
I’d be keen to hear what he has to say about a low dose of clonazepam daily for this if a person finds benefit in a benzo. Does he support benzo use like this as long as tolerance does not develop and the patient keeps trying to crank up the dose?
Best … Scott
That was quick - I got an end of Feb appointment when I ran at the beginning of November for the state specialist here
Well done on securing a quick appointment Todd and good luck.
Don’t know about the US but here in Australia you’d need to ask the Dr’s permission first before recording him. Which I’m sure you’d do anyway - perfect manners etc 
He’s cool with being recorded. That’s how I transcribed the Baloh interview. But of course, ask him first if you choose to do so. 
— Begin quote from “scott”
He’s cool with being recorded. That’s how I transcribed the Baloh interview. But of course, ask him first if you choose to do so.
— End quote
Why stop there - take a camera crew! Make up, gaffer, best boy, stunt doubles, catering…
LOL. Webcam? Live, right here. :lol:
Yes, I believe we should all “tune in” for this appt, and they should offer a Question and Answer period at the end of it. It should only take about 57 hours or so…lol
Scott, does Dr. Baloh know about this site? I have read somewhere in the past that he isn’t hip with benzo use…damn the injustice! Maybe I"m wrong? I’ll be interested to find out…
Todd-best of luck getting this mess under control!
Kelley
Thank you all for your gracious replies.
Great idea regarding an audio recording of the visit. I will bring my daughters IPOD…knew that damn thing would pay off eventually!
I am also going to summarize my medical history into a one (1) page sheet with bullet points so we have more time to chat rather than perusing through multiple chart notes.
5 days into the diet, 2 days on Celexa…nada. I realize this is going to be a marathon,not a sprint though.
todd
Hey Todd – how did it go with Baloh? No doubt a long day with flying down there at the crack of dawn.
Scott
Hey Scott,
Thanks for asking.
Yes, it was quite the long day.
I met with him for one hour and did, in fact, record it. When I get some sleep, I will rewind it so I can remember everything he said
He is absolutely convinced that I have a migraine that has “locked in” and manifested itself into all of the symptoms that I have.
Despite all of the work I have had done on my inner ear, (gentamyacin shot, fistula repair, dex shot)…he does not think I ever had an inner ear issue at all 
He thinks the level of medications that I have been on before have not even been in the neighborhood of treatment for migraine. He is bumping up my Citalopram to 40mg immediately and will look at 60mg down the road if it has no effect. From there (if not successful), he will begin medically managing my scripts with the assistance of my local doctor in Spokane.
He is confident that we will beat this and get me back to normal (whatever that is anymore ) I wish I had the same level of confidence that he has, but to say I am cynical would be the understatement of the day .
He mentioned I need approximately 3 months at the higher dose to know whether or not it is having any kind of effect on me. We shall see.
Thanks for the well wishes and I will keep you all posted. Here goes nothing! :lol:
Todd,
It sounds like the appointment went really well. Excellent idea on recording the appt - will give you a chance to review the information and let it sink in after you’ve had some sleep.
What frustrates me in your case is how, like many of us, it’s taken you so long to get the diagnosis and you’ve been down so many rabbit holes. Given the prevelance of migraine and the relative rarity of MM I really hope more docs start to get the message about the symptoms of chronic migraine and look at it as a first possibility rather than a last. On the other hand, I understand doctors’ caution in eliminating other serious things eg MS first.
Anyway Todd, please keep us updated on your progress and best to you.
Vic
Hi Todd – thanks for letting us know how it went.
Interesting how he said it had “locked in”. Did he elaborate on that any more? Any new bits of info that you think are news to you, please don’t hesitate to scrawl it down here when you feel up to it.
I’m glad he seems very confident on your dx but yeah, it sucks that you got the Meniere’s run-around. I never realised just how well MAV can mimic Meniere’s until this last year of 1) being a member at MM.org and 2) the recent stuff that’s appeared in the literature. Well, it’s water under the bridge now and you can only move forward and in a better direction now. Did he have much to say about other drugs or comment further on the use of Celexa for MAV?
Cheers … Scott
— Begin quote from “scott”
Interesting how he said it had “locked in”. Did he elaborate on that any more?
— End quote
I wonder if he meant ‘chronic’ in the same way that Halmagyi says ‘cycle of migraine’?
I wonder if MAV is really the right term to use actually since what most of us on the board struggle with is ‘chronic’ migraine, of which vertigo is one part, albeit a very obvious and annoying part.
Vic – I suppose there is chronic MAV and non-chronic MAV. I definitely know some people with the non-chronic version. They take no meds but get slammed once every 4 months or even once a year. They’re out for a week with vertigo and derealisation, take the whole week off work freaking out, and then it goes (not the hardened MAV soldiers we are :lol: ).
I wonder how many are walking around with chronic migraine without vertigo and without head pain? So what would that entail? Is that what CFS is?
Dr. Baloh kept reiterating that this is NOT MAV…it is migraine, period. He wanted to make sure that I understood that this was a brain genetic disorder which, more often than not, is hereditary (my daughter and father have migraines…the headache kinds though…no dizzies).
He said that everyone’s threshold is different and for some folks, simply changing their diet can do the fix.
For others, it’s a matter of tweaking meds until we find the right one.
He reviewed my meds that I have previously been on and thought they were way too low to have any effect. Thus, I am following his lead with my medication dosage protocol.
He mentioned sleep and stress as the biggest triggers. He did not seem overly concerned about a MAV diet, although I am still on it (as I have lost a few pounds in the process as well. )
3 months at the highest dose is the only time that you will truly know if the med is working…so I have a lot of wait time ahead of me.
He essentially said that migraine is the only thing that makes sense…period. Nothing else would last this long and be this chronic and locked in. If it were an inner ear issue…the good ear would have compensated by now and I would have begun feeling better. I am still quite skeptical about getting better…I just can’t picture it happening. However, I will keep trudging forward per his protocol. Thanks for listening!!!
Todd –
Great info. Like how he hates calling it anything except migraine – nothing more, nothing less. We may call it MAV but to be fair not all migraineurs deal with vertigo. I’ve said it before though, we might as well say “migraine associated headache” (MAH), “migraine associated anxiety” (MAA), “migraine associated visual snow” (MAVS) … or how about “migraine associated I feel like shit” (MAIFLS) :lol:
Hmmm … maybe the forum needs a name change. Migraine hell forum?
It all boils down to the same root cause though. Migraine. Baloh doesn’t bullshit anyone that’s for sure. Calls it as it is. If he says you can climb out of the migraine pit, I’d start believing it. If there is one guy on the planet who rules as the ultimate migraine guru, it’s him.
Scott 8)
ps. Todd, I know you were still wondering if you had MM and not MAV some time ago. Just wanted to make sure you saw this article I put up the other day. I’ll drop the whole paper in there tonight if you want to read all of it. Anyway, it clearly shows just how migraine can dupe us into thinking there’s an MM condition going on:
http://mvertigo.cloudapp.net/t/important-case-reports-menieres-or-mav/2548
We’re getting into really interesting territory here, talking about definitions. I think we’ve even had this discussion before…?
As you say Scott, MAV simply means vertigo, the source of which is migraine, rather than some other condition. Vertigo is but one of the many, many symptoms of migraine. There’s also migrane associated brain fog, migraine associated fatigue, migraine associated anxiety and so on.
The other thing that I think we and the docs are coming to appreciate is that migraine manifests not solely as a distinct event with a clear start and end point. One can indeed be in a cyclical or chronic state (including with periods of remission). In my own experience I also sometimes have what I describe as ‘migraine activity’, that is, low level symptoms which are annoying but not debilitating. I think the ‘old’ idea of the ‘distinct event’ migraine really doesn’t tell the whole story.
In reality, this board is made up of people who don’t ‘simply’ or solely suffer with vertigo. The consistent theme it seems is we all have, or have had chronic, long term, unrelenting migraine. The majority of us seem to have to continuously ‘treat’ our chronic migraine with lifestyle modifications and/or daily medication (phrophylaxis/suppressant).
So, I’m with Todd and Dr Baloh. It’s migraine. Full stop (for our US friends that’s ‘period’ ).
Vic
Hmm, the last doc I saw called it “central sensitization resulting from a headache disorder”. Rather than seeing this permanent ongoing foggy head, weird vision, disequilibrium etc as migraine per se, he sees it that frequent migraine episodes (albeit atypical ones) have caused more permanent hyperexcitation of the nervous system. We still need to treat the migraine with drugs/diet/whatever works, as further migraine “episodes” will further stimulate this state, and increase the sensitization - maybe this was what Baloh was referring to when he talked of being “locked in”. The migraine itself goes but the nervous system is locked in to it’s migraine like sensized state. It continues to transmit too much information to the brain and is unable to filter out the "white noise - kind of explains why benzo’s provide this symptomatic relief that people see.
Kind of made more sense to me than the theory that people have one migraine which lasts for many years …
Hx
WOW, glad to see you made it back in one piece. That must have been a long day! You guys make a lot of good points with this dizziness being “locked in”. Did Baloh say that anxiety could cause this problem to become “locked in”? Did you ask him about the exercise and what he suggest you do about the fact that it makes you dizzier? Thanks Todd!