I think my MAV is either SCD or PLF

I have a cold and am very congested today. This is the second time I have been able to recreate this: I blew my nose (I don’t believe I blew too hard) and I got so dizzy/lightheaded I felt like I had to grab onto the counter in front of me and yell out. It passed after about 15s-45s and then I felt better. My MAV has always been worsened by straining/lifting/exertion and relieved by rest, otherwise when I walk I am usually feeling unsteady.

I told this to Hain the first time it happened and he said to focus on SCD and PLF - to get a VEMP. I’m going to Lahey this month to see Dr. Toh. Not sure if anyone here knows if she is good? If she blows me off I’m flying to Chicago. It’s been 3 years and I’m just about done with this.


I was wondering if you’ve had a high resolution CT scan of your inner ear yet? And if so, if this showed anything up?

I have MAV and also had a couple of bouts of BPPV. But I also reacted to sound and pressure (but sound more so, e.g during an MRI scan every time the machine banged my eyes nearly jumped up out of my head!), and in particular had pulse synchronous oscillopsia (my vision flickers up and down with my heartbeat), which can be a symptom of SCD. I also found sudden changes in pressure also set off some vertigo. My initial inner ear MRI showed something possible like this, but the high res CT scan showed there was nothing wrong. I was pretty disappointed at the time as I quite liked the idea of having something potentially fixable with surgery. I think it’s also good in a way to have a diagnosis for sure, rather than one like MAV where it’s really a diagnosis by exclusion.

However, a while later, I have to say I seem to have got better anyway, so I presume the MAV diagnosis was correct.

I think you need to know for sure what is going on. But I just wanted to say that I shared some of the SCD symptoms but it didn’t turn out to be that. I think that’s a problem with MAV and inner ear disorders that so many symptoms can overlap between conditions.