For Bec

Hey Bec,

I thought I may as well start a new thread.

I am wondering if the initial episode was possibly BPPV which was totally unrelated to the meds and then the fact that I came off the Sandomigran quite quickly after that, along with the initial BPPV, possibly combined to spark the MAV.

That’s a very good point and could easily explain what happened, that is if you’re really sure it was BPPV. I’ve had two BPPV attacks with this over the last 6 years and according to the science lit, BPPV is quite common for migraineurs. Definitely happens a lot. The sudden stop in Sando would explain the ramping up of symptoms.

I am seeing John Waterston in June and I hear he is quite heavily involved in MAV here in Melbourne.

Yes, he is apparently very good. Guess what one of his favourite MAV meds is? Sando! There’s a paper posted on here that he authored you may want to browse. Even people with intractable 10 year cases saw complete resolution of symptoms on it. Here’s the link:

mvertigo.org/articles/Chroni … ertigo.pdf

Cheers … Scott

Hey Scott, sorry I didn’t respond before now - haven’t quite worked out how to navigate around these kinds of sites and keep missing replies and posts…

Thanks heaps for your feedback. In fact, I was at the VRT therapist today at the Eye and Ear hospital in Melbourne and we were pondering why I would have had BPPV whilst on Sando (yes, it was definitely BPPV) and in fact she said that she has seen quite a few patients who got MAV following an initial bout of BPPV. I know she’s not a doctor but she is associated with Waterston and obviously sees a lot of this kind of thing. We have decided VRT is not going to work without meds but as it is not sending me backwards I am persevering with it for now.

Am seeing my regular neuro in two weeks and hope I can get onto the Sando then. Then a three month wait for Waterston.

Also got my balance test results back - totally normal - which I believe also supports the MAV diagnosis. I’ll be very, very surprised now if any doctor tells me it is anything else as I am convinced MAV is behind this.

Oh, and thanks for the link to Waterston’s paper - in fact, I had already stumbled across it in my googling travels and found it extremely interesting… and encouraging!

Good luck with your time off medication - hope your good day today is the start of an upward swing for you.

Cheers,
Bec.

Hey Bec,

Your therapist sounds to be right on the mark. I think something like BPPV which is a big trauma to the brain with all of the balance upset could easily set off a dormant migraine brain (when I saw Halmagyi 2 years ago he said to me that when a regular person has a BPPV attack they never arrive in his office but it’s the ones with migraine who do because it is orders of magnitude worse). Likewise, a BPPV attack might actually be the beginnings of MAV for some people. It’s a bit of a chicken and egg scenario. Which came first? It is pretty weird why you got hit with BPPV on Sando … you’d think it would protect you from it if it was migraine-based. But then anything goes with this junk.

Deciding to halt VRT without meds is pretty much in line with what Dr Steve Rauch says about all of this. For some here, VRT (more in the form of exercise) seems to help, but I think for most it makes things a whole lot worse if migraine is not reined in first. Rauch has said that VRT making dizzy symptoms worse is practically diagnostic for MAV.

Yup, not unusual for a normal balance test to come back even though you feel totally unbalanced. I really look forward to hearing how the appt goes with Waterston for you.

Today I had a really excellent day with zero meds. It’s day 5 I think off of Paxil and I’m really pleasantly surprised. I shouldn’t even mention this though … always that fear of a jinx.

Scott :slight_smile: