And the wii fit… I hadnt thought of that. Thank you, I’m off to find a 2nd hand one on ebay! x
Hi all,
so, I’ve just had my first appt with Dr S! Lasted an hour, and he asked lots of questions about exactly what symptoms I felt - some were quite difficult to answer - e.g. “does the disequilibrium/false motion that you feel, feel worse when standing, or sitting, or lying down?”. Also, he wanted to know about the frequency and severity of what I call “attempted mini spin attacks” (and Muppo calls ‘brain zaps’)! I did some marching on the spot with and without eyes closed, toe-to-toe walking (with and without eyes closed), he checked my ears, and did the ‘head-shake’ test whilst watching my eyes.
He realised that I had probably garnered a lot of info by now (after 3 years) but described how the visual, vestibular and proprioceptive senses need to be ‘singing from the same hymn sheet’ and that when they aren’t the result is what I’m feeling (24/7 false motion, etc). He also mentioned that we (humans generally) are never truly still, and always moving very slightly, and that usually our brains would ignore this type of subtle information as ‘white noise’, but when irritated by MAV etc, they become hyper-sensitive to such tiny movements and instead of filtering it out and ignoring it, they focus on it and try to process it, etc.
He said that the main problem area is the brainstem, and blood vessel spasms. I questioned whether this was an out-dated theory, and he mentioned that it is still very much part of the picture, but just a part (the other part being the complex chemical interactions, etc). It was hard to gain too much information, simply because he was asking lots of questions of me! The hour just flew by. I’m to undergo more tests, because the ones I had by other consultants were done were in 2009, and he wants updated information to check what the vestibular system is doing - so in January, it’s hello to ENG/VNG and Caloric testing (yuck!).
The migraine diet is what I’ve mostly been following for the past 2 and a half years, but is even more strict - can’t even have any Rose wine, and no eggs, although I can have a little skimmed milk for my cereal and decaff coffee (but only 2 -3 cups per day) - wooppeee - aren’t I living the life!??!!
Now for the meds - he’s going to keep me on the Topamax (I’m currently on 80mg per day) for now…but he’s adding 300mg Gabapentin per night for a week, and then 300mg twice per day for a total of 600mg per day, after the first week. I think he plans to reduce the Topamax at some stage. So does anyone know anything about Gabapentin (Kelley - help!) 
Tony.
P.S. Edit: Forgot to add that he mentioned that it was worth being very strict with the diet in an attempt to knock this thing on the head (in conjunction with meds); it’s been 3 years now, and basically it was time to attack this thing aggressively in an attempt to beat it into submission. All in all, I left feeling like I was in very good hands, and that we would have a clear direction in terms of strategy for tests, meds, etc. 
I had Dr S do the caloric tests on me a few months ago. It wasn’t anything like as bad as I thought it was going to be so, don’t worry about it too much. Because he uses air and not water the reaction isn’t as great.
Is your tinnitus constant or does it fluctuate? If the latter, is there any pattern to it, for example after eating ?
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I’m having the whole vestibular/balance testing stuff done on Dec 9th so I won’t know til after then… But he said from the basic tests he’s done, and my tinnitus, he thinks there’s damage to the left side… I guess we’ll see after the 9th. I’m not looking forward to it. I heard the calorics are gross
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Great write-up missmom.
I wonder about the spasm thing too. Is there a definite loss in the one ear of more than 30% by caloric do you know? Otherwise I’m not sure how that point can be made.
Whatever the case, I’m glad he’s got you well-covered. I like the automatic to manual analogy. Very fitting indeed.
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This all sounds really positive, You got a great deal of info out of him I must say. I’ve had the tests and they are bareable . Sounds like his even has cutting edge instruments. Sounds like he can really crack this MAV. keep us posted.