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PPPD epidemic about to hit the UK


#1

According to an article by Natasha Wynarczyk in a copy of the Daily Mail dated 22nd May 2018 PPPD was only ‘classified last year and is still unknown to many medical professionals’. I am now wondering if it will become the latest choice of diagnosis to be given out to sufferers of vestibular complaints. We have had Floating Woman Syndrome, vestibular neuritis, labyrinthitis, then MAV. Will PPPD be next. Time will undoubtedly tell.

In an extremely informative and detailed article that didn’t IMHO carry anything groundbreaking PPPD was described as being a chronic syndrome where people felt they are swaying and triggered by something that has previously made the patient dizzy …’even a migraine that occurred with dizziness’. The young man featured had been up the Empire State Building. Key Distinguishing features of PPPD were reported to be the swaying and the fact that PPPD sufferers symptoms tended to resolve when they lay down.

Two eminent experts quoted were Professor Peter Rea of Leicester Royal Infirmary and Balance Clinic and Professor Linda Luxton of London Hearing and Balance Centre. Professor Rea said low doses of antidepressants help ‘although more research needs to be done into exactly why this is” . As @turnitaround recently stated elsewhere in similar circumstances - ‘Snore’.

All publicity on vestibular matters is useful but couldn’t somebody get on and find the real causes and proper cure. Please.

I haven’t been able to find this article on line. Would think it an easy and worth while read if PPPD interests you although I don’t think it contains anything new.


#2

Don’t forget ‘Menieres’ was a catch-all at one stage … and then ‘PLF’ …

Basically, as some commentators have pointed out they are all somewhat related (hey, they are based on the same anatomy after all) … but the focus seems to shift … at one point they are blaming chronic dizziness on ‘migraine’, some other day they were blaming all on ‘leakage’ … on another they were blaming it on ‘hydrops’ … another ‘anxiety’ gets a go … I personally feel all these things are involved. There is a neurological element (which can escalate into migraine), a fluid balance element, a physical element …

I seriously don’t know why they bother inventing new categories until we have superior telemetry …

Found it:

This guy sounds like a ‘normal’ case of ‘MAV’ but possibly doesn’t get migraines? (lucky him!)

Which highlights the superficial way they diagnose these things without actually knowing what’s exactly happened or happening in the inner ear. He wasn’t given a ‘MAV’ diagnosis because he doesn’t get migraines?

Oh and let me guess … the treatment is the same?!

Be interesting to know if this guy had tinnitus … if he did then I think it’s seems obvious to me this was kicked off by an inner ear problem …

Very interesting things kicked off after returning from a pretty high altitude … I wonder if he had taken a lift? …


#3

Agreed BUT

with PPPD I’m wondering did they invent it or did they cause it. Guess there may be exceptions but really you could think of PPPB as MAV ‘With knobs on’. Follows some acute vestibular event and associated with anxiety and after a period of time you have disruptively serious MAV with anxiety, er …PPPD and sufferer doesn’t cope hence more anxiety. Been there, done that one. Medics ignore vestibular event, misdiagnose it and it doesn’t really go away, anxiety+++ follows, and they give it a different name.

[quote=“turnitaround, post:2, topic:15454”]
This guy sounds like a ‘normal’ case of ‘MAV’ but possibly doesn’t get migraines?

Read ‘girl’ for ‘guy’. I didn’t get migraines either. Not for many years. No obvious association for the medics and nobody attempted to take a full history or look at My Notes I suppose. Strange how a friend who regularly had classic migraine with aura once heard me explaining my symptoms to ANO and said “that sounds just like my migraines, without the headache”, and we all laughed! I should have had her as my GP.

I’d say ‘unlucky him’ - and me - cos if I had, just maybe, somebody would have twigged what I had long before it became chronic. Episodic anything is easier to treat.

I’d say ‘unlucky him’ - or me- cos if I had, just maybe I would have been diagnosed before it went chronic. Episodic anything is easier to treat.


#4

Why, what’s the additional symptom(s)?


#5

The anxiety. The fact that the dizziness is non-vertiginous. The ‘persistent’ bit - some consultants/medics don’t believe MAV can be other than episodic (how we wish that were true). The trouble dealing with complex tasks - ditto. With PPPD distraction supposedly stops symptoms as does lying down… can these be
The knobs’.

Personally I think it’s another very dubious diagnosis. They all are. They seem to overlap to a point that is meaningless. Maybe some people do get PPPD eventually post-MAV but where does one end and the next begin. These vestibular things do seem to morph. Just cos you don’t tick one box today doesn’t mean you won’t tomorrow. It will be difficult to diagnose just from symptoms


#6

Totally agree with you Helen.


#9

A year or two back I came across a draft paper on PPPD, entitled ‘a CBT model of PPPD’’ (would we survive without abbreviations) and drafted by a clinical psychologist and an audiologist. Yes, that’s interesting in itself, not a neurologist in sight it seems. Www.matthewwhalley.com Quite an interesting insight IMHO. Also contains a pretty good section on how they retrain for Motion Sensitivity and Visual Vertigo. For the benefit of those who soon lose the will to live in long documents, and it is lengthy, try Page 19. Generally there are few references to migraine. The one I found interesting was in the section relating to retraining for Motion Sensitivity/VV (couldn’t resist) , ‘it is important to ensure that the patient is not a migraineur’.


#10

my conclusion is that if the ‘response’ of your vestibular system is changing too much, it will put you at risk of migraine.

so yeah, difficult to compensate for a fluctuating response (but not necessarily impossible).

if you have choice of a lesion, have a stable one if you want to compensate :slight_smile:

However, fluctuation might also mean ‘reversible’ so this is not necessarily undesirable …


#11

Definitely. However I did wonder what they would do with any they ‘discovered’ they had. ‘Pop’ them back in the waste paper basket they’d come out from in the first place maybe.

Vital info. I will try to remember that for next time! Ah I remember the day I got the MAV diagnosis and was pleased. What blissful ignorance.


#12

We just have to wait for superior scanners to clear all this up. Oh and a trip to Mars.


#13

Yes my (Hopkins) neurologist added PPPD for me at the same time he seemed to be basically firing me. I think he was frustrated that I wasn’t getting better and no drugs he tried were helping. Funny thing is I had been passed to the Neuro by a oto neurologist when they couldn’t clearly find the cause (some possible things but not clear) and he wanted me to go down the MAV path for a while to see if that helped. I wasn’t happy with that but was willing to try the various drugs although none helped. 2nd neuro I’ve seen and they don’t want to consider that the cause isn’t neuro based so in my opinion they are only good for getting drugs that might help symptoms.

To me this PPPD is pure BS. Basically saying it’s in your head and you need a psychiatrist to help you stop making this up. Although I have clear vestibular issues shown on tests.

The only thing positive I could take from this is that maybe there could be something to the possibility that you could improve symptoms more if you could lower your anxiety and work harder at your vestibular rehabilitation. Of course the VR only works well if the underlying problem is consistently bad and not varying a lot.

For me, my biggest concern is the attacks which aside from being horrific also cause my steady state vestibular function to be worse after each attack (last one 4 days in hospital, 2 months to walk unassisted or drive). This was 2 years ago and I have found some things to stop attacks through recognizing the warning signs, stopping all activity and taking valium. Still concerned I will have another attack - it’s that old “progressive and incurable” thing I read when first looking up Meniers.

I’m actually doing well right now and I think whatever was damaged in the attack has healed enough that the vestibular therapy is now working somewhat and allowing my steady state to improve. But 2 months ago I went through a bad spell with bad migraine symptoms, worse balance and near attacks.

So not cured and still hoping one day they will have better technology and be able to stop the attacks and cure me. In the meantime I’m not planning to see a PPPD psychiatrist since I’m pretty sure it’s not all in my head.


#14

I had the same reaction to my albeit MAV diagnosis after clearly articulating the trauma to my ear. I challenged my oto-neurologist to explain why I had become severely dizzy for the first time in my life only 15 minutes after pointing a shower into my ear (for the first time in my life). She dismissed it as sufficient trauma and when I asked her for an explanation for the sudden return of dizziness and new, objective ear symptoms she suggested I’d experienced a genetic mutation! Maybe she was trying to calm my anxiety, but it sort of backfired. It was at this point I started to see the cracks in the system. My faith in medicine was only restored after my 3rd alternate opinion when I met a doctor who was much more of a free thinker and didn’t simply follow professional dogma (which seems to me to be unquestionably matching symptoms to a diagnosis using just a check list which is how MAV is defined). It was odd to recognise that this doctor was using knowledge medicine already had had for decades even 10 years ago before everyone became too obsessed with the migraine component. He was able to explain what had happened to me (initial injury, compensation, delay, decompensation) and it simply made sense.

I get that. This part is sensible. The MAV protocol is state of the art for chronic dizziness because it is based not just on hypothesis but good solid clinical response. It’s definitely worth pursuing.

In these situations it is perfectly reasonable to explicitly state whilst they aren’t perfectly sure what is happening and there is uncertainty in the mechanism, it is worth trying this protocol.

Whilst my new diagnosis made sense, I did not unfortunately lead to any superior treatment options. It did stop me searching, helped me develop a good mental model of what was happening to me and accept my situation a bit more. This is a very important aspect to patient ‘coping’ some doctors seem to overlook. I do feel very sorry for those MAVers that have this come seemingly out of nowhere with no explanation! That must be a bitter, unjust pill to take - at least I know it was my fault!

The fundamental problem we face is the lack of tests that can track someone’s ear characteristics every minute of the day when at home and not in the clinic. That in my view would highlight instability which would explain the decompensation & the resulting migraines. We need a non-invasive objective test to track inner ear pressure over time continuously. I recognise this is a big ask from technology. Perhaps though it will be enough for researchers to identify more subtle changes in the inner ear with newer, higher resolution MRI scanners that have yet to be rolled out to oto-neurology at clinical level. I must say though, there is nothing subtle about my subjective ear symptoms!!

I also believe there isn’t enough understanding about how to recognise Secondary Hydrops either. Too many doctors assume it must show up like Menieres (“You can’t have Hydrops because you have no low frequency hearing loss”). There is clearly more than one kind of Hydrops condition.

If you are interested I believe I can explain this “vestibular hangover” phenomenon completely. I recently elaborated on my theory and observations on relevant published work.


#15

Dave, I’m curious, what vestibular issues showed up on your tests?

What “warning signs” do you have before an attack occurs? I wish I had some sort of warning before mine occur.


#16

Wouldn’t it be best idea to ask for further clarification about that, artery wasn’t it, that was pressing against the important T nerve. You wrote:

How dare they suggest PPPD with this still outstanding unresolved issue. Those ‘clear vestibular issues’ just might be your SOMETHING @Manatee says we all wish for, and boy, she’s right. If it had been me, I’d be tearing at the bit, at least to find out more. Yr vestibular attacks sound severe, much like mine (eight days knocked out flat literally at a time and never fully recovered) and I too came out of every one with worse balance issues so shared all your current fears. Just the faintest possibility that they might be eliminated for good rather than be plastered over. Wow!

Please to go back and demand further investigation.


#17

Vital. Everybody has to find a diagnosis that is meaningful and aceptable for them. Psychologically vital and as @turnitaround says often overlooked.

Do you really think there are very many MAVers in this situation, with MAV arriving ‘out of nowhere’. I wonder. Hope. Ot. If a detailed history was taken. How many have previously suffered trauma, RTA, sports concussion maybe. This forum has turned up a few.

You mean a sort of heart monitor, for ears. Good idea yes. Heart patients borrow them from the hospital prior to annual check-ups. ‘Big ask’, of course, technology’s busy developing bits so we can - yawn - reach Mars but do you know why they are pushing for Mars. It’s for distraction. Because they know so little about how the balance systems work they cannot get robots to walk on two legs without falling! So they push for Mars hoping it will prove easier.

You said it!


#18

THIS hits the nail on the head. You are so right. I remember thinking the same thing a few years ago when I was told “vestibular migraine.”

Then I went home and started reading about it:
“Eliminate about 100 foods from your diet, and maybe that will help. But maybe not.”
“Try a drug and, if it works, great, but if it doesn’t work try a different drug. Repeat that process a dozen or more times.”


#19

The VEMP test showed weakness on left side and the HIT (head Impulse Test) showed severe weakness on left side. This ties to my vestibular ocular reflex issues where it is painful to scan left and right for instance looking for something in a grocery store or driving.

I guess I wonder if they have enough good test to really see that you have issues. If someone has trouble walking and knows that their balance system is broken I would think this could be confirmed with the right testing and don’t understand when they tell you that they don’t see any significant issues. Hello… I am not imagening I have balance issues I am falling or miss-stepping and having trouble walking like a person who isn’t drunk. There is a vestibular problem of some sort and your testing just isn’t good enough. I went from feeling like my body was a sports car to feeling like it was a boat.

And this whole nystagmus thing as well. I ask my neurologist why i get crazy nystagmus when I lay back and to the left (bad side) and how this is connected to a migraine. No real answers.

As to how I know when an attack is coming. It’s a feeling that is hard to describe but I’ve gotten better at sensing it early. There is left ear fullness, a silencing of sound and extra tinnitus. There is also a feeling I can’t describe like impending fall. I immediately drink water, take a valium and sit somewhere quietly and so far I have avoided attacks for a couple of years. I always carry valium and Zofran (to stop vomiting in case of attack so valium will stay down) and try to always have water and just drink more. Contact lense case works well for keeping these drugs in my pocket at all times. My last attack I had grown complacent and didn’t have them with me out on a walk with the dog. Vomited for 12 hours then to hospital for 3 days. Just think that if I had valium and water I might have stopped this one as well. 2 years to recover and feeling pretty good right now but still have affects and more near attacks.


#20

Let’s be more optimistic.

I don’t think anyone’s balance system here is necessarily ‘broken’.

My theory is that by and large people’s senses are ‘unstable’ not broken, for which the brain struggles to compensate.

My strong educated hunch as you may know is this is about the plumbing in the ear and that somehow the fluid pressure is out - in short this is simply about a ‘swelling’ in the inner ear.

I doubt there is very much actually ‘broken’, but this ‘swelling’ introduces huge instability because the pressure causes the fluid pressure in the inner ear to ‘hook up’ to blood & CSF pressure … hence giving you the odd sensations at certain angles and pulsative tinnitus to name two symptoms.

Our italian friend at hydrops.info maintains hydrops is completely reversible, and I believe he is right. It is also not like glaucoma - the pressure never gets high enough even with hydrops to do any lasting physical damage to the neurons - this is why people with MAV don’t go deaf.

I doubt if you looked at very hi-res MRI you’d see a single membrane broken.

An attack is most likely a leak imho and this causes even more neurological fall-out as the brain cannot correlate this to real movement whatsoever, but attempts to do so. I believe the leaks unfortunately exacerbate the swelling so are best avoided. Hence my advice to be very careful, not to strain, not to bend over and not to recline flat or tilt head backwards.

I’ve noticed that over time my symptoms have decreased, but very slowly. I’m convinced this is simply down to the ‘swelling’ decreasing over time. My vertigo attacks have all but completely disappeared, and I believe this is simply because the pressure no longer rises enough now to create a big breach.

In short, things are a bit messed up, a bit unstable, ‘out of tune’, but not ‘broken’ :slight_smile:


#21

I KNOW ‘underneath’ my balance system isn’t broken. It can’t be. Like you I suffer acute attacks, nearly always last 8 days each time and leave me bedridden and unable to stand. I have no balance. If my SO didn’t hold me up, I’d never get to the bathroom. Then gradually my balance comes back. It takes weeks usually. Whilst I have an acute attack I have constant pressure in the back of my head ie in my cerebellum which is the brain’s balance sector. Guess it’s swollen. No idea how it works so I cant agree/disagree with @turnitaround. I’d say the migraine takes over from the brain and is sending false information so the brain loses the plot with regard to where upright actually is and where we are in space. Once the migraine receeds eventually normal service is resumed. The same applies to the nystagmus, that’s another symptom something is misfiring. With migraine everything goes a bit ‘hyper’ the neurologist told me. And how!

So I know my balance system is fine deep down. I can see a neurologist and pass every balance tests he gives me with flying colours. As long as my eyes are open but that’s because I’m even more visual dependent than most (another longer and not altogether separate issue). On a goodish day I can almost meet the time limits for my age ‘eyes closed’. Provided I’m not in acute phase I can stand on one leg, either leg, do Right/left leg kicks (tai chi). So, how could it be ‘broken’?

Unfortunately, even though I pass all the tests and can prance about on one leg, like you I’m

Agreed, here too. Trouble with balance testing, Balance is such a complex phenomenon, nobody really knows exactly HOW it works so how can they know exactly what to test for? Frustrating, or not!


#22

These days I get tightness in the back of my head, louder tinnitus and then, really bad news, tinnitus in my good ear, ear pressure, tight jawline, shoulder and neck pain or at least tingles, like ants running about under the skin where my spine runs into my neck. Long ago, no warning at all just wake up with it. Once or twice the dizziness would just start up, often in a restaurant but until recently no real warning.

Years ago before I knew I even was a sufferer, I was always impressed with how predictable migraine must be. Two women I worked with had migraine with aura. They always knew exactly how long they had to get to a safe place once the aura kicked in which made my arranging to cover their work that much easier. At the time migraine seemed quite civilised and easy to live with. How wrong can you be.