The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

MAV vs PPPD help!!

Ok I am at a bit of a hurdle as I am now really confused about the difference between MAV and PPPD. I was on holiday (beginning of July) when this started and it was much more severe I.e could feel the room spinning and every slight head movement made everything worse. So I am thinking it was Labyrinthitis and has now developed into something else. The severe symptoms lasted a few weeks then subsided to more of a general dizziness and it’s only bad if I move my head a lot but still it sucks. Doing work and looking down at the keyboard and up sometimes gives me nausea like a motion sickness. I went to the ENT at the end of August and he said he was 99% sure it was Vestibular Migrabes based on the fact that a string symptom of mine is head pressure at the top of my head and around the nasal passages. I do have a brief migraine history and my brother really suffered migraines as a child but these were classic migraines not vestibular. I was put on Nortriptyline by the ENT and was on 10mg for three weeks at the end of which I noticed an improvement. He said I could up it if I wanted as I was only on 70% improvement so I did up to 20mg and felt bad again the next day. I have been on 20mg for just under two weeks so I’m not expecting to feel better until I hit the three week mark. The problem is I am not sure if I have MAV or PPPD. With walking I feel disequilibrium and being inside shopping centres makes everything worse. I would describe it like my head feels swimmy when I move it, like I can feel my brain isn’t stuck and moves slightly. Driving actually makes me feel close to 90%. I also take vitamin b2 and magnesium which is supposed to help the tiredness. I am trying the migraine diet, eliminating red wine and in fact all alcohol for the time being, cheese (although had a bit of melted mozzarella today on my toaster), limiting chocolate and only having 1 or 2 cups of caffeinated tea a day. No coffee. If I start to feel confident I have MAV then I will keep going with the Nori but if it is actually PPPD (as I have a history of anxiety) then nortriptyline is surely the wrong mediciaton and I need an SSRI? Any help is greatly appreciated.

You can add Secondary Hydrops and even PLF to that comparison too, as they all present pretty similarly.

Sorry, don’t want to complicate your search, but all MAV is defined by is its set of symptoms. Seems PPPD differs only with its greater emphasis on SSRI’s and a different hypothesis?

I very much doubt you can get a vestibular issue from anxiety. Just don’t believe it. That’s invented by doctors who just haven’t experienced what it’s like to have a vestibular problem. To me it’s obvious people get anxious from having a vestibular issue.

I would explore the MAV protocol and work out what works for you. You can legally try an SSRI without leaving the ‘MAV’ umbrella.

The thing that gets me with PPPD versus MAV is that people have been improving on SSRI’s for years having been diagnosed with MAV … so I’m really not sure what help this new diagnosis is if only to de-emphasise the migraine element?

My friend has generalized anxiety disorder and when he gets panicky he starts to feel dizzy and off balance. Can last a couple weeks. I don’t see why it couldn’t go either way: dizziness->anxiety or anxiety->dizziness. If people can pass out from anxiety, certainly they could get dizzy from anxiety.

But yeah, if its a long lasting dizziness for months on end, and the patient is actively trying to manage anxiety, I don’t see how we can continue to blame anxiety. It definitely frustrated me to get treated for anxiety when I felt that the dizziness was causing my anxiety.

1 Like

To me it does sound more like the dizziness is causing the anxiety in your case. I too have suffered from depression/anxiety earlier in life, but as my dizziness and head pressure gets under control my anxiety has come way down. I am similar to you, driving makes me close to 90%. I also struggled with shopping centers and feel like my brain moves slightly, like shifting from side to side and back and forth. SSRI may treat you well, but in my case I took Paxil and had pretty awful results. If I could do it again, I would try Effexor instead as its recommended much more often in migraine patients. If it were me I would stick it out with Nort for awhile and just accept the MAV diagnosis for the next few months. I mean you have head pressure, right?

Sounds like the usual BS to me.

The fact is, if you have a compensated Secondary Hydrops and you get a little anxious about it, that can tip you over into dizziness … ADH is an input to fluid balance in the inner ear. Basically it can create a vicious cycle.

There are probably a other ways you can lose homeostasis, hypertension being another…

I do not subscribe to wavy hand inexact explanaions for dizziness … there has to be a very real physiological reason.

And the reason I get cross about this is that its an excuse for inaction and on the part of the medical community!

1 Like

Its not BS, we are in semantics here.

That’s effectively what I’m talking about. It’s how people can pass out from anxiety. They get so anxious that their brain cannot get oxygen and they faint. So you could effectively say that in some cases dizziness is caused by anxiety. I’m not saying you or me or anyone else on here has that case, but it is certainly possible for some people. And I think its important to acknowledge that, specifically for my best friend who has suffered from anxiety and seems to get a bit tipsy AFTER he experiences anxiety. Its not his brain that is making up dizziness, its that his anxiety causes physiological changes that affect his vestibular system. I think we are saying the same thing.

I see where you are coming from.

I guess what I’m saying is that whilst that’s managing the condition, it’s not a fix and you are then potentially stuck on meds and that’s where my frustration lies.

Sorry Erik, not personal, but this stuff gets me super frustrated.

If someone clearly gets dizzy AFTER they get anxiety, then in my opinion treating the anxiety is the fix. Again, not saying any of us here are in that case, but we shouldn’t assume that it could never happen that way.

1 Like

It’s ‘a fix’ for sure … but I guess I’d like to see far more focus on finding a root cause.

Instead of just papering over the cracks, why can’t we deal with the shifting foundations?

Does anyone else feel better if they block their ears? Like if I block my ears and turn my head I feel normal and not dizzy! Wonder why this is?

No worries, believe me (sorry for the Trump phrase), its incredibly frustrating and personal.

1 Like

Yeah, I’ve noticed that on occasion. Started to wear earplugs to see if that would help, and it does in stimulating places like the supermarket or airport.

It is extremely unlikely to pass out from anxiety… Almost unheard of, because during anxiety or panic one’s blood pressure is rising and it can feel as if you’re going to faint but you don’t. Also, people in that state tend to over breathe if anything so there is no starvation of oxygen. I thought I’d mention this because misinformation like this could lead anxious readers down the line becoming more anxious in thinking they’re going to faint when in fact it never really happens.
Regarding vestibular problems, anyone with them can become anxious when their world is spinning. It’s only natural. But to treat anxiety misses the point. If one is anxious because of a vestibular problem, it’s the vestibular problem that needs addressing first otherwise the cause of the anxiety will still remain. Sufferers throughout the years (including myself) have been misdiagnosed with anxiety when there was in fact an underlying cause for it. There’s always a cause for anxiety and if you remove the cause, the anxiety will disappear.

1 Like

I agree with you. I was misdiagnosed with anxiety for a whole year before I even knew about VM/MAV. Extremely frustrating, and most of on here have experienced that.

I was simply arguing against @turnitaround strong claim:

It is possible to get so anxious you feel dizzy. I have a friend who gets that. It happens. That’s the only point I was trying to make. So, in my friend’s case, he treats anxiety/stress and doesn’t get dizzy. I don’t feel that’s the case for most of us on here because its more chronic and severe dizziness, but I just like to keep an open mind about root causes of dizziness.

And as I become more episodic now rather than chronic, reducing stress and anxiety is very helpful. When it was chronic, it really didn’t matter what I did.

Erik I think my point was not to refute what you say but just to point out that it is very possible his symptomatic threshold is low potentially because of an underlying health condition which has not been identified. I’m totally convinced that medicine does not yet have all the tools to identify such more subtle conditions.

Yes, I agree as well. The body is very complicated and interconnected.

1 Like

Well, having done some further reading I now see things a little differently.

Having now seen there’s a link between serotonin levels and inner ear endolymph management, and a clear inner ear response of some kind to heightened levels of anxiety, I now totally see how your friend could get dizzy from anxiety.

It would also makes sense, though, that an existing compromised vestibular system, especially the inner ear, might have a lower ‘tolerance threshold’ to increases in anxiety.

So I think my statement about this being ‘BS’ was a bit extreme, apologies. There is definitely much truth in this, but it must be hard to say what is causing what on an individual basis without much more telemetry?

1 Like

I actually had another interesting anecdote story from my audiologist. She said she took an SSRI for anxiety in college and she got quite dizzy from it. As soon as she stopped taking it the dizziness went a way. Now I know most meds come with warnings about dizziness, but because SSRIs are fairly selective on the neurotransmitter serotonin, it could make some scientific sense w.r.t dizziness as you point out.

1 Like