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PPPD or MAV or...? (and hello!)

Hi all. New to the forum. Not sure if I have MAV… doctor thinks it’s PPPD, also there’s been talk of vestibular compensation and decompensation. All a bit of a mystery!

I’ll post my experience here. Very long post, but it might be interesting to people. Any suggestions welcome.

Back in 2008, when I was 20 (I’m 32 now), I had a sudden attack of spinning vertigo at 2AM. I was a typical university student and we were all drunk and high at the time, so I assumed it was that, and went to sleep it off. The next day, the dizziness was still there: spinning and severe unsteadiness. My eyes felt pressured , as though something was trying to push them out of my skull… and they looked strange, “glassy,” vacant and staring.

After a few GP visits, I got an initial diagnosis of labyrinthitis. I did an eye test to be sure: results = normal. Also a comprehensive hearing test: results = normal. When the dizziness didn’t clear up after three months, I was referred to a heart specialist, made to do various tests and put on a 24-hour heart monitor: results = normal.

The symptoms continued, coming and going every month or two, seemingly at random: light-headedness and a feeling of being about to fall, coupled with severe pressure all through my head and eyes. It was made worse by being in busy places, like restaurants and supermarkets. Looking at a screen set it off, also reading a book.

Later that year, another attack of spinning vertigo. Ears were blocked for a month, with mild tinnitus. Referred to a neurologist. MRI scan: results = normal. Then referred to an ENT, had diagnostic hearing tests and basic vestibular tests: results = normal. Tentative suggestion that I had “atypical migraine.” Then given a 7-day heart monitor: results = normal. Finally I was sent to a psychiatrist who, after a few sessions, concluded that I have no obvious psychiatric issues, and probably the dizziness was because I got drunk/high at university too much, and it “fried my neurotransmitters."

Through this 18-month period I felt like a pin-ball, flying back and forth between doctors! I was prescribed medications: Stemetil, Betahistine, Amitriptyline, Fluoxetine, Lyrica, a migraine medication (which I forget) and others. By the end I was on a cocktail of five different pills a day. And my symptoms seemed to be worsening: instead of waves of dizziness every month or two, the light-headedness, head pressure and confusion were now daily and permanent. I couldn’t do uni work, nor could I socialise with friends. I moved back to live with my parents, and became socially isolated and quite depressed.

Finally I decided that the doctors weren’t helping, so I stopped seeing them; and that the medications were possibly making the thing worse, do I came off them. Being a lot more mature and proactive at age 22 than at age 20, I started thinking outside the box – doing things like acupuncture, trying new sorts of exercise, changing my diet, cutting out caffeine etc.

And, very slowly, over a few years, it worked. The dizziness started to dissolve away, then by age 25/6 I stopped noticing it completely. I was able to start living my life again. I had a good seven years: I finished uni, went into full-time employment, got a relationship, got a new social life etc. I reintroduced caffeine and (for a while) alcohol, and it was fine. Maybe once a year I’d have a little unexpected flutter of light-headedness, for maybe two minutes, and I’d think “oh yes, I remember that!” But it would disappear again, and I’d carry on as normal. I naively assumed, whatever exactly the dizziness had been, it was now pretty much gone forever.

Seven years later… last year (2019) it unexpectedly came back in full. Initially it was severe headaches at work, then a feeling of disorientation when I was commuting on the train, then finally waves of severe unsteadiness and light-headedness, to the point where I had to sit down in case I passed out or fell over. No spinning vertigo this time, but otherwise the symptoms were the same as 10 years ago; I spent a few months unable to be on a train, or inside a shop or restaurant, unable to look at a screen for more than 20 minutes etc.

Took a month off work. Did lots of things like clear my diet up again, came off caffeine again, started exercising properly again; also bought migraine glasses to help me look at a computer screen. Then returned to the doctor’s office! This time, I was determined to get an answer. Another ENT, who referred me to a vestibular-audiologist. They did two hours of comprehensive vestibular testing, and – miraculously – found something:

“Today’s results indicate a peripheral vestibular asymmetry with lower function in the left ear. There were some abnormalities with ocular motor testing that could indicate CNS involvement.”

Primarily I failed the VEMP test, with 0% functioning in (part of) the left ear. They explained that probably at age 20 I had a bout of vestibular neuritis or labyrinthitis, and it permanently damaged the left ear. Over time, I “compensated” for this loss. It took so long to compensate because of all the medications I’d been put on, and all the anxiety and stress of that time – the condition had been “poorly managed.” Anyway, it compensated and cleared up for seven years. But the brain can also “decompensate,” which was what had happened to me. Possibly it was the stress of the job (though I don’t remember being that stressed); possibly because, at work, the ceiling lights had been starting to flicker, and I’d been standing underneath them for seven hours a day. Also at that time I was having chiropractic adjustments on my upper back and neck (I have a rotated upper spine, so live with chronic pain and discomfort in the neck) – and I wonder whether the adjustments changed my alignment and that confused my balance system. Or possibly a mix of all three.

The audiologist started me on VRT exercises, which I’ve been doing daily for seven months now. The dizziness seems to be slowly resolving: now it’s a light-headedness that comes and goes through the day. Usually I wake up feeling groggy for a couple of hours, then around 11AM I start getting moderate (occasionally severe) light-headedness, which lasts until about 1PM, then I’m OK for the rest of the day. The symptoms are mostly in the background. I’m able to work a busy full-time job, just about! But I can’t commute any more, nor can I look at a screen for the first few hours of the day, because it confuses my eyes and I become imbalanced.

The audiologist referred me back to the ENT department for a second opinion from a specialist in vestibular migraine. He doesn’t think there’s a migraine element. His tentative diagnosis is PPPD (Persistent Postural Perceptual Dizziness), or “secondary autonomic imbalance following vestibular neuritis.”

The PPPD thing makes sense to me, but then so did the compensation/decompensation framework. I’m not sure if PPPD is just another way of describing the same thing, or whether it’s a separate diagnosis. The “visually induced dizziness” part is exactly right for me – I have a textbook case of that. I’m not sure about “postural” or “gait” issues – unless my spinal rotation was a consequence of the initial vestibular disorder, as a way of balancing me.

Anyway, soldiering on. Another appointment with the ENT later this year, for more tests and perhaps a conclusive diagnosis. Currently trying magnesium supplements and powdered ginger tea. Read Heal Your Headache and trying to cut some things out. After I cut cocoa out, I noticed a definite improvement; haven’t had cocoa for six months now. Feeling fairly positive, given everything! At least I’m on the right track… we hope!!

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Dave, welcome to the site and sorry to hear of your story but many thanks for sharing. Gosh how disheartening for you to have it come back like that?! At least you know the things that will help you. Keep soldiering on (or as member Mazzy says ‘keep on truckin’) and I do hope you get things back under control.

I’m sure recompensating is within your grasp, go for it!

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Hi Dave, this was the progression for me as well, although I wouldn’t have described it as headaches at the time, more like head pressure. Do you still have headache or headpressure symptoms? I think its really tough to distinguish PPPD/MAV many of us on here could probably get diagnosed with either or both depending on the doctor we visit.

Sounds like you got a good handle on how to get better, keep working on it and let us know how you progress. Heal Your Headache is a good thing to try. If you still have head pressure and you really don’t want to try any meds, consider looking into the Cefaly device, it works well for me.

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Thanks for the reply! Less headache and pressure now, more the light-headedness and awkwardness in the eyes.

From scanning this forum, also researching PPPD, I can see the difficulty distinguishing between these conditions. My feeling is that, in some cases (like mine), we’re talking basically about an inner ear malfunction, and the brain doesn’t recalibrate like it should, leaving you with chronic symptoms, which then become your new normal. Some doctors label that state as PPPD, and some people on here call it “the migraine brain,” but it’s pretty much the same thing - and when your brain finally recalibrates, it goes away again. Unless there’s a decompensation and you’re back to square one, etc. Obviously this is not the case for probably most people on here, who have “actual” migraine, with no inner ear damage - and it presents as vestibular symptoms.

If that’s BS, I’m on here to learn, so please do correct me! :slight_smile:

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I’m with you on this one. Unfortunately with the lack of definitive physiological evidence (inner ear tiny and stuck within a thick bone so very hard to observe in detail) it turns into an argument with at least two sides and a belief system on each.

So you will only find some agreement and some disagreement here but no complete answers as in science they don’t yet exist.

My belief, which is controversial, is we are talking about an unstable, not necessarily “damaged”, inner ear. I got my MAV from injury. It’s a loss of homeostasis.

“Migraine” is promoted I suspect as easier to explain away and calm patients. And dish out pills. Call me a cynic. They talk about the “silent migraine” but it might as well be the spaghetti monster, imho.

To me the migraine element is just an escalation of the decompensation and stress the brain and nervous system comes under to try and get things back under control. In fact it may even worsen it which is why they are so keen for you to get the migraines under control.

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Thank you for taking the time to write replies; really appreciated!

I don’t know if there is any scientific writing on this topic, more along the lines of my (and your) intuition? What I’ve found is either papers that talk about vestibular damage and compensation/decompensation, or papers that talk about migraine as something inborn and unrelated to ear damage, or papers on PPPD which talk about chronic dizziness (but don’t mention, for example, triggers like food and temperature - which are triggers for me). I haven’t found anything about vestibular malfunction causing a chain reaction which leads to migraine symptoms, or symptoms which closely mimic migraine. And the link between these migraine symptoms and the compensation/decompensation process. In my mind I can sort-of fill in the gaps and hypothesize how it all fits together, but it doesn’t seem very scientific !!

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Yup and worse there is probably political and organisational bias in medicine and silo thinking because neurology wants this condition for itself. Can’t let the ENTs have it!

I’ll tell you why such papers don’t exist in high numbers: it’s simply not possible to grade and monitor endolymphatic hydrops on a constant basis in patients. You can only snapshot the inner ear and only when the person attends a cutting edge MRI facility. You can’t do that at home. So there is no way of determining fluctuation on an ongoing basis. I suspect with MAV it’s about changing inner ear response not about extreme changes. The small changes are enough to confuse the brain’s learnt patterns.

But like you say, this is an educated guess. There’s a lot of argument about this in #research-theories-controversies which requires a high trust level to access gained over time from using the site. You can see the heated discussions that have taken place on this: plenty don’t share this view.

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You do seem to be getting a good grasp of the situation. Certainly not BS. Seems as good a theory as any for your own personal situation. MAV seems to me to be a bit of an umbrella term covering various variations of symptoms of a basic balance disorder. Many lean much more towards the migraine end than others. I suspect many cases are multifactorial as a neuro otologist originally told me years back. Being at the hormonal influenced migraine end I would say I cannot relate to ‘compensation/decompensation’ much at all but many others can and do.

Might I suggest you try searching ‘Central Sensitisation’ ? Might fill in some gaps.

Of course so much of it is only theory. For some reason there’s few volunteers to take it any farther once the specialists explain post mortems are most likely to prove the best path towards a proven explanation👻. Sorry, my macabre sense of humour escaped again.

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Update: the neuro-otologist has diagnosed PPPD. He’s discounted the VEMP test finding, and thinks my ears are fine. Instead, “Your brain isn’t working properly”! Well, we know that…

The diagnosis of PPPD is based on the persistence of the lightheadedness/heaviness (daily, waxing and waning), and on the fact that it’s triggered (a) by motion and (b) by focusing on things, e.g. books or screens.

I have so many symptoms, though, which aren’t included in the PPPD diagnosis, e.g. head pressure, light-sensitivity and sound-sensitivity, headaches, and most importantly the fact that my biggest triggers, aside from the above, are things like caffeine, chocolate, MSG, changes of air pressure and temperature etc. My lightheadedness is hyper-responsive to these, flaring up like clockwork whenever there are changes to my diet or the environment. The doctor dismissed all of that, saying he didn’t know but it wasn’t relevant to PPPD. I mentioned the Heal Your Headache book, which was a revelation to me, and he pretty much rolled his eyes!

I also pointed out that I’d had significant improvement when I started taking daily magnesium, B2 and CoQ10, but he also discounted all of that, saying that I could take supplements if I wanted but he couldn’t see how they would make any difference to my symptoms. Well, they do! He was emphatic that I shouldn’t take medication. His advice, ultimately, was “Think about positive things and live your life!”

I’m glad to have a diagnosis… but I don’t feel that my symptoms have been fully accounted for. I know in a sense the label doesn’t make a difference or matter – but still…

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The label provides an element of closure, if you are comfortable with it.

It also helps you commit to the treatment.

Now you can focus on getting on with the rest of your life and let recovery happen spontaneously.

Good luck Dave!

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Dude, PPPD or MAV if your neuro did not offer any meds choices , find one who will. You don’t have to suffer longer than you already have.

head pressure, light-sensitivity and sound-sensitivity, headaches are all very common in the VM world. You would do better with a med. Find a more educated doc or a neuro-otologist.

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Yes good point @GetBetter. Sorry somehow I missed that bit apologies.

This I’m afraid might not be enough.

Positive attitude is super important but when I was at my worst I needed medication to get me back to being able to live a life resembling normality.

I would get another opinion. (I ended up with about 5 lol)

It’s your call ultimately and it depends on how bad your symptoms are now. Eg if you can use a computer all day and your condition doesn’t affect your work etc.

Also how bad is your quality of life in general now? Meds can optimise that.

A pretty low dose made a huge difference to me and on balance taking meds was at first absolutely the right choice.

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Incredible and in my mind… reckless medicine on his part.
To simply ignore symptoms that are considered diagnostic by the worlds foremost physicians in the field is reckless and borderline malpractice in my estimation.

Thanks for the replies! Quality of life is actually OK at the moment. I can get on a train again without almost passing out, after eight months of not leaving my town!! Took a six hour round trip on a train a couple of weeks ago… still tired from it, but I did it! Small victories. Work is OK, but I can avoid looking at a screen mostly, and can move around a lot, which disguises the symptoms. Can read a book for maybe an hour, before I start feeling “off.”

The thing does seem to be slowly clearing up, like it did last time. The light sensitivity has passed; the head pressure is a lot less. A year ago I had daily bad headaches and now they’re quite rare. So I’m ambivalent about medication. Might just be better to go with it, see what happens… and it’ll keep slowly improving.

The frustration is more just about the diagnostic label, which I know is just a word, and these labels are arbitrary etc… but I don’t think “PPPD” fully captures everything. I feel like the doctor only listened to half my symptoms, diagnosed me based on them, and just dismissed the rest. I was especially disappointed because during our previous brief telephone consultation he asked me to compile a medical history, so I spent a month putting together (very concisely!!) my 12 year history, the symptom progression, different doctors’ diagnoses and medications I used to take. I emailed it to him… he of course didn’t read the email, and when I handed him a hard copy in person, he just skimmed it for five seconds, said “I know all of this already,” and filed it away.

I dunno… compared to previous doctors I’ve seen, he was validating and very helpful! But in my dreams I’d see a doctor who would sit with me at length, fully explain my symptoms and show me a clear way to health. I guess we’d all like that, wouldn’t we?! :smiley:

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