Hello from a newbie - VM/PPPD

Hmm… it does sound odd! Perhaps there’s something faulty at your house, and you’ve got carbon monoxide poisoning.

Or… changes of light and environment can trigger this sort of thing, so perhaps it’s that. Mine does the opposite: calms down when I’m at home, flares up when I step outdoors. I feel that is a more common experience. PPPD/migraine symptoms flare up in a busy, bright, noisy environments, so I don’t fully understand why yours get worse when you’re chilling out at home. Unless… what’s your wallpaper like?!!

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See this is where it gets peculiar. I used to be more dizzy outside than inside. Over the course of this year, its shifted to be the opposite. Actually since Covid started, my dizziness has been way worse. Probably due to sitting too much, and too much screen time. I can’t think of anything else. Maybe also my bad life-long posture - I need to look into cervogenic dizziness too. The back and neck can add to the dizziness.

Yup, bad posture here too! I’m sure it doesn’t help!

That’s a good point… when you say your dizziness gets worse inside, what are you doing inside? Do you step indoors and immediately look at your computer? Because that would explain it. If you’re just stepping through the front door and you feel dizzy for no reason, that’s more mysterious.

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Btw For PPPD you have to have had constant non vertiginous dizziness for minimum of three months.

Is this constant? Happens every single time? What would happen if you went out then back in and walkdd around the house and back outside and continued walking for a bit without stopping. Start noting the degrees of difference in the light as a guide. Search this site for ‘inflated Head’. Could be light sensitivity though it’s far more common to be worse outside or in an unfamiliar indoor environment. I have been told everybody with vestibular issues should always be better in their own home, it’s their most familiar environment. . As you call it spatial obviously could be aggravation of the vestibular system because of the changes in spaceyness between the two extremes. I find this inflated head filling will cut in when the balance system is challenged really hard.

How long does it take to wear off this when you come back indoors dizziness?

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It happens. I have a friend who had one constantly for about five months only last year until Propranolol stopped it. There was a young girl on British TV a month ago who’d had one for about a year. They don’t get called ‘migraine continuum’ or ‘status migraineous’ for nothing.

An explanation for the 24/7 dizziness symptoms I find extremely plausible is that an already hyper sensitive system goes on constantly being aggravated/reactivated by lots of stimulation which would be ignored by a properly functioning vestibular system. MAV symptoms are caused by Central Sensitisation. There are links to papers on that on here.

Well you are immediately two up on me though I did have my hearing tested, with a tuning fork! Did you get that pleasure too? Seems to me the US does most vestibular testing. Things we never hear of but do patients get better quicker? Not that I have noticed. OK I guess they may pick up the case of SCDS but they are very rare anyway. The US posters get more thorough testing and seem to have a much wider support network in terms of therapists I have never heard of but they still end up trial n error testing the same oral preventatives we in the UK do. It’s the only way. Most of that is discovered can’t currently be treated otherwise anyway. You are young and still very idealistic. That’s natural but if you are looking for a quick and possibly surgical fix I feel you are heading for disappointment unfortunately. Don’t get me wrong. It’s good to explore all possibilities. Doing that one day somebody might just find a more definite answer. As for Istanbul that’s a surprise. Pity Covid scuppered your chance.

One more from me, re. PPPD or migraine.

I found this quotation from Dr. Silver, on an old thread on this forum, which is his description of one form of migraine:

“Dizziness or a sense of imbalance is extremely common: this most commonly manifests as “migraine-related dizziness” with a feeling of being light headed and spaced out and may be more likely in bright, hot, crowded or noisy places. Some people may feel panicky when this first starts but panic often disappears relatively early in the condition in most subjects. During this dizziness there may be a sense of unreality of self or surroundings and there may be accompanying blurred, spottyor dark vision and/or buzzy or reduced hearing. Some people experience true vertigo with a sensation of surroundings moving and this usually occurs during headache. There may be “visual vertigo” whereby surrounding visual stimuli create a sense of imbalance or dizziness. Visual vertigo may be provoked by various stimuli including stripes, patterns or carpets, escalators or stairs, supermarket aisles, rotating ceiling fans, flickering televisions, road markings etc. Finally people may just go off balance when walking so that they veer to one side."

Lightheadedness, imbalance, feeling spaced out… plus anxiety/panic… gets worse in crowded places, supermarkets, when focusing on the TV etc. This is pretty much the definition of PPPD, but Dr Silver describes it as an “extremely common” form of migraine.

I also remember a Johns Hopkins migraine presentation I watched on YouTube, which lists PPPD as a form of “secondary migraine.”

All I’m doing is reiterating what was said above: these aren’t separate conditions, and you move from one to the other randomly. They’re either the same condition given two different names, or two spots on one continuum.

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How to fix this :weary::unamused:

Yes, this is baloney, imho. So is thinking that several seconds of spinning is several seconds of migraine, come on! What’s happening is a state of decompensation due to physiological fluctuation and a lack of homeostasis which the brain is chasing (it eventually catches up as the fluctuations decrease)

I suspect spinning attacks are more likely to be something like this https://mvertigo.org/t/fascinating-theory-around-mechanism-of-vestibular-attacks-related-to-hydrops/19202?u=turnitaround

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So then how am I or others having constant dizziness or sensations for months or years on end?

:flushed: I always thought it was constant migraine

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I literally get dizzy as soon as I enter my home and walk inside.

I had a neuro appointment today and my doctor explained it. Basically when your outside and moving around the signals from your brain travel faster vs. when your at home and resting, where the signals are slower. This in turn for whatever reason causes more dizziness. And in my personal case, this is why at rest I experience intense tingling in my feet (especially when I wake up first thing in the morning). The feet are a balance organ and that fact that im still having intense symptoms is my bodies way of signalling that I havent recovered yet. He said all of this also concludes that I dont have an organic disruption in my body. Having such feet symptoms is uncommon but he does see it sometimes. In any case, I’ve been referred on for more specialist testing on my feet.

Yeah, I have had this.

It happens almost every time. After I come back indoors, it can take anywhere from 15 minutes to hours for the dizziness to go. But my neuro explained this (please refer to my comment above).

Personally, I agree with @turnitaround in that a single event migraine cannot go on for weeks or months. Migraines have a very clear lifecycle. @Onandon03 You are correct regarding the dizziness - it simply occurs because the body is on high alert, because the balance system hasnt yet recovered yet. The dizziness is simply the bodies way of signalling that you’re still not 100% healed.

I spoke with my neuro today and he believes that my symptoms are now mostly PPPD with very little migraine element. I’ll see conclusion once I get the write-up. I’ve been referred onto the PPPD specialist within his group and a general neurologist to investigate my feet.

He said out of all the patients his group, he believes I am one of the stand-out performers with respect to healing, especially given that I haven’t taken any anti-depressants. That was very encouraging to hear.

His general message was to keep ploughing on naturally and things will get better (albeit slowly). He also said its OK to take a rescue benzo 2x a week - anymore than that and he would recommend an anti-depressant.

Having experienced Vestibular Migraine and now PPPD, in my personal opinion they are very much two distinct conditions, on a similar spectrum but both very different. PPPD shouldnt really be treated with a VM hat on. A couple days ago I spoke to a well regarded VRT specialist and she said that PPPD is a harder condition to treat compared to VN/VM, and she genuinely believed in PPPD. My previous VRT physio didn’t believe in PPPD, which wasnt great.

I’ve been having what I thought was a relapse and I’ve been dizzy daily for 3 months. Do I automatically have pppd now?

Really interesting thread!

Sorry to bang on about the same thing, but if migraine and PPPD are “two distinct conditions,” how do you explain the fact that you’re diagnosed with PPPD but have multiple symptoms (light sensitivity, headaches, tingling) which (1) are nowhere in the PPPD literature and (2) are migraine symptoms?

I’m not sure if you have a different conception of migraine to me, in that you think it’s a “single event” with a “clear lifecycle.” I can see why you hesitate, because that conception doesn’t fit your current symptoms at all. But there are other writers who understand migraine differently…!

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It does seem implausible but it happens. The problem is we tend to project our own MAV experiences to others’ experiences. You are right, migraine has a clear cycle, but someone with status migrainous is constantly in a cycle between 9 and 10, not 0 and 10.
Even though I’m hovering around 100% I still have constant mild head pressure, tingling sensations, and muscle twitching in the face. But just because I experience this for myself does not mean I believe everyone who has a MAV diagnosis has 24/7 migraines. It could be that just one migraine triggers vestibular decompensation for several days. Or it could be that vestibular decompensation triggers a migraine, or none or both (positive feedback). And to be clear, I do believe that migraines can affect vasculature and blood flow in the inner ear. So, I’m also not arguing that my inner ear is not affected by migraines.

Not to get long winded here as we’ve had debates on here for years about this… but… MAV is a diagnosis of exclusion and not all MAVericks are created equal. I can tell you that my personal experience feels entirely migraine-related as I had terrible head-pressure symptoms for 2 months before I started to get dizzy. And as I’m hovering around 100% recovered, my head pressure (and migraine symptoms in general) is very, very mild. But, to be truly honest, I can’t prove it. I don’t think anyone can.

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So what exactly is he saying? The quick change over of speed in whichever direction causes the increased symptoms? Otherwise how is he accounting for your reverse of what most others, me included, experience always being worse outside than indoors in a familiar environment. I read it as there’s much increased stimulation outside which we all knew anyway. You only have to look at deconditioning in people coming out of hospital.

Ankles, toes and the soles of your feet play a huge role in balance. Six months intense VRT made me over reliant on them to the point it would take me two days to relearn a different pair of shoes and during that period I wouldn’t be able to trust my balance at all. Any change to floor surface had the same effect for a couple of years. I didn’t experience any foot tingling though but everyone is different.

Let’s not be pedantic about this. Maybe people just have one migraine after another or because the system never gets a chance to reset itself the hypersensitivity remaining just gets constantly triggered by fresh stimulation. I imagine that’s what happened to me. My vestibular attacks were what some refer to as ‘silent’ migraine and regularly lasted over a week in fact I eventually had them back-to-back so I had hardly a better day in two months and all that time I had amongst all the other symptoms a severe amount of rear head pressure (later described to me by a neuro as ‘the migraineous element’) which made it impossible to do anything but lie flat in bed. I know the resultant dizziness and that rear head pressure (albeit at a reduced level) then stayed with me constantly for about 2.5 years. It never left. Photophobia which I didn’t have when the dizziness and RHP first became constant reappeared and then stayed severe for 18/24 months. So I have no difficulty believing one individual couldn’t have what would appear to be an ongoing migraine for either five months or a year or indeed even longer. I am not saying the migraine necessarily caused the condition in the first place. It could well be another symptom of the condition in itself. Another clog in the wheel that keeps the vicious cycle going. I have no idea.

@ak90 I wish you luck with your PPPD treatment. I have always understood MAV and PPPD to different. More distinct. Treatment is or at least is supposed to be. I was surprised however that the neuro takes your symptoms as being PPPD where most people on here have had the same attributed to MAV. Maybe we’ve all been misdiagnosed all long and that’s why we still struggle. Trouble is there’s so much theory and so little fact. There was - maybe still is - quite a large consensus of ‘experts’ who believe dizziness can only occur as part of a migraine as prodrome or aura or whatever and that constant symptoms are therefore bound to be ‘something else’. Guess they might be more likely to subscribe to PPPD. Others discount PPPD entirely.

I hope you will feel able to come back sometime with an update of how you fare and maybe a summary of your PPPD treatment regime. That would be interesting.

Reading this particular thread I can imagine it could well certainly make somebody think so. Truth is nobody really knows. We each need to be our own advocate. We each need to do a bit of research ourselves then assess and if necessary follow up with an appropriate medical professional. There are several PPPD threads with links to more detailed case studies. See if you can relate to any of their dizziness stories.

It doesn’t make sense though because at the beginning of my relapse I had to wear sunglasses inside, the lights were bothering me so much. I couldn’t even smell coffee. I wanted to throw up. So, it’s like was I having a “migraine” and now it never ended?

I’m confused and just wanted to feel better, whatever it is…

Hi, same as you, I suffered for 18 months before starting medication. Mainly because the doctors I saw had no clue what was wrong with me and kept playing it down. I finally saw a neurologist who knew what was wrong and I’ve been taking 40mg of Amitriptyline for a year, it honestly gave me my life back, I’m much improved. It is not good for anyone to suffer needlessly, as I really don’t think mine was going to resolve without meds

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Just to broadly address these two points, without getting into a huge debate - there is some indifference in the medical community about MAV & PPPD, but it is actually well documented that PPPD is very distinct and hence why it was given its own respective diagnosis criteria.

Here is an extract from a good paper, which highlights what my neuro (and me) think I have:

The Bárány Society have set out diagnostic criteria (Box 1) [35] reliant upon a thorough clinical history. Like many other functional neurological symptoms, PPPD is not a diagnosis of exclusion, although physical, neurophysiological, biochemical and radiological investigation may be required to fully explore alternative differentials. The clinician must be mindful that PPPD can co-occur with structural vestibular and other neurological disorders. For example, a patient with VM may develop PPPD with acute vertiginous episodes (VM) on a background of persistent dizziness (PPPD) [36].

What this is saying is actually well documented in scientific literature - that PPPD tends to occur after a vestibular event such as VN or VM. Whether you want to classify them as all the same condition is up for debate but I would just describe PPPD as another phase in the journey.

Having PPPD doesnt mean you cant have VM symptoms - it just means that the PPPD symptoms now outweigh the VM symptoms therefore it would be clinically incorrect for a doctor to diagnose me with VM. My neuro said I now have more PPPD, but a touch of VM.

I don’t know the physiological explanation, he just told me in laymans terms. I guess when you’re resting you’re more aware of what your feeling. Its actually well documented in scientific literature that distraction techniques cause people to forget symptoms and can be used as part of VRT programmes.

I think you hit the nail on the head there, in that MAV symptoms continually evolve and sometimes were so caught up in it that maybe we don’t even realise. Sometimes it takes me 2-3 months to realise that a symptom has gone away (maybe due to brain fog).

Like the experts I dont really have a conclusive answer but I just see it as a car crash type injury. My vestibular system got severely injured and its still in recovery mode. Kinda like when people suffer paralysis and need years of rehabilitation to recover.

I’ve had to stop all my vitamins and supplements due to a digestive issue, so lets see what happens. I hope VM-type symptoms don’t resurface. And my next step is to start VRT again - to my understanding that is the only way of actually physically healing the damage.

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Thanks for the great reply. This is one of the more thought-provoking threads I’ve seen on here recently, really got me thinking about my own symptoms and diagnoses.

I wouldn’t say that any of this is “well documented,” in that the diagnostic criteria for PPPD were only set out three years ago, and there’ve been a few papers done on it since, but otherwise no one’s heard of it (one trite example: it doesn’t have a Wikipedia page!).

With regard to different conceptions of “migraine,” it strikes me that generally people have a narrow conception (bad headache), which doesn’t take into account other manifestions e.g. vertigo attacks. But then, on the other side, you have something like Heal Your Headache, which subsumes a massive number of disparate things under the migraine label - and you start to wonder if this conception isn’t a bit too inclusive, broad and undiscriminating. I guess the PPPD label is an attempt to get a bit more specific, and that’s got to be a good thing.

I’m certainly a textbook case of PPPD - persistent dizziness, no spinning vertigo. But my PPPD functions exactly as migraines do - it’s triggered by food, caffeine, temperature changes, stress etc. All the literature on PPPD describes it ebbing and flowing at random. My ebbs and flows are not random at all - they have to do with, for example, did I have a Chinese takeaway two nights ago?!! And, second, the migraine treatments help. Magnesium supplements gave me an almost instant 30% improvement in symptoms. Giving up chocolate gave me a 20% improvement within a week.

But my neuro-otologist was sure that PPPD has nothing to do with diet, and that supplements would be no help - and all the scientific literature agrees with him. (If anyone can find anything written about dietary triggers in PPPD, or supplements helping, I would be amazed… and very grateful!) So, OK, fair enough, I accept that I’ve got PPPD, but I don’t accept that it’s totally distinct from migraine. Based on everything I’ve experienced, it’s so similar to migraine that it has to be some sort of rare version of it.