Hello from a newbie - VM/PPPD

Hello! I’m new here too myself! I can’t give much advice on coping/treatment but…I’d be hesitant to come to the states (if that’s what you were thinking) for more testing. I live in the Midwest and I have decent health insurance which is still about $700 a month for me and my 2 kids. The best way I can put this is, even with my insurance, the amount of medical debt I’m in from trying to figure this all out is insane. I could of bought a brand new car with it.

But! I don’t want to assume your financial situation at all and you are more than welcome to do whatever you feel is best for your health. Just wanted to give you a heads up that the US might not be the best option if you are looking for further testing/help.

Best of luck to you! Hopefully we can make it through all of this sooner rather than later.

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Hi Everyone. Its been a long time since I’ve posted in this forum (last post was in January!). My journey started in March 2019 with VN, then VM and more recently PPPD.

The good news - I’ve now reached a point where the vast majority of VN/VM symptoms (including panic attacks and anxiety) have naturally gone away.

The bad news - I’m experiencing PPPD symptoms everyday (unsteadiness, imbalance, dizziness, numbness/tingling in feet, light sensitivity & a newer symptom…headaches).

In terms of the last 10 months, I came off propanolol which I was taking for panic attacks. Stuck to only vitamins/supplements, starting exercising again (which was a huge victory!!) and lots of self-positivity. I’ve been free of medication for 5 months now.

I guess my question is had anyone else’s condition moved on from VN/VM to a more pure PPPD? And if so, what did you do to get better?

I have an appointment with my doctor soon. And I’m in the process of starting VRT again soon (its hard to find a PPPD specialist - any recommendations?). I am also contemplating medication (my doctor mentioned 10mg Citalopram back in January, but I had VM at that point so his recommendation may change) but I am very against anti-depressants, and dont feel like I have any choice left anymore - im tired of living my life to only 70-80% :disappointed_relieved: I tried Effexor and Cymbalta in the past, but had to stop both after 1 day.

Has anyone also looked into Gammacore vagus nerve stimulation?

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Your post highlights something about these conditions. They seem to be defined by their symptoms. I suspect you are not suffering from 3 different conditions, but one condition that has changed over time? Most MAVers experience a significant change in symptoms over time, usually towards easing and cessation (though the progression is so slow and full of relapses its very hard to identify it until much much later and with hindsight).

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I’m not sure really. The only thing I’m sure about are my symptoms. I’ll let my doctor confirm which label it falls under, but from the official medical diagnostic criteria, I feel it falls under PPPD definition. My last appointment was in January before lockdown (he officially diagnosed me with Visual Vertigo & PPPD - his notes dont officially state VM, but 2 previous neuros said VM) and my symptoms have changed alot since then - it will be interesting to see what he says.

You won’t have miraculously got 3 totally unrelated different rare conditions you’ve never had before, trust me :smiley: Or if you had, you could also land a coin on the end with every toss :wink:

MAV morphs. I think i must have had several distinct phases which all blended into each other and varied in length and symptom constellation.

I suspect its the long way back from a massive loss of homeostasis, the ongoing impact of that and very slow resolution back to homeostasis, with a lot of chaos both physiologically and neurologically in between.

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Your guess is as good as mine.

This was my diagnosis (copy and pasted from my doctors report):

Findings:
1. History suggestive of partially compensated vestibular neuronitis.
2. Visual vertigo
3. Anxiety and hypervigilance.
4. Persistent perceptual plus postural dizziness (PPPD).

1, 2 & 3 have pretty much gone. That’s what I meant in my prior post.

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There was a old folks type song ‘little boxes, little boxes and they’re all made of ticky tacky…and they all are just the same.’. Came straight into my mind here. I really don’t think lives and emotions can be neatly split up like that. One minute you are suffering from MAV and then that suddenly becomes PPPD. Question why do you think it’s changed. Your list of supposed PPPD symptoms sounds as typical of MAV as any I have seen. MAV symptoms morph over time. Happens all the time. Besides PPPD has its own distinct set of criteria and occurs after the main traumatic event which caused it ceases by my understanding so a new headache? Unless of course it’s a plain non migraine type would seem odd. I have read many times the MAV dizziness often morphs to be a headache. That I can believe. I would imagine your MAV has just moved on a bit. You don’t say what symptoms you had at first but it does tend to worsen over time. Mine most certainly did.

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Yep, in any case I would say this: change in MAV (or whatever you and your doctor want to call it) is good, it shows progress and your body resolving the knots you’ve got yourself into. All good!

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Clinically speaking would it be appropriate to diagnosis someone with “MAV” if they have no vertigo? Maybe PPPD is a better label for those that no longer experience vertigo? I dont know to be honest.

Regarding past symptoms - I have pretty much everything you can think of: severe vertigo (could barely walk), severe photophobia, extreme panic attacks (landed me in hospital a few times), severe hypervigilance, numbness/tingling in all limbs, sound sensitivity, ear symptoms, extreme depersonalisation/brain fog, nausea and very bad unsteadiness/balance (probably more that I’ve forgotten).

As of today I’ve recovered enough to jog again and play football (hurray! :slight_smile:). My dizziness is at its worst when I’m sitting down. And my balance is worst, shortly after I get up from sitting or laying down.

I think it’s all on a spectrum. Some don’t get hearing loss, others do. It’s all about severity of the initial upset and the reaction your body has to it, both physiologically and psychologically.

I could bore you stupid about the theories I have about the common aetiology that underpins all this, but I’ve written about that extensively elsewhere.

It actually frustrates, even annoys me a little, that all doctors can do is come up with new labels instead of actually working out the cause(s), underlying molecular mechanisms and improved therapies based on their improved knowledge of that detail.

But then you realise they are not super human and are just trying to classify things as best they can so that one day perhaps that extra classification might be useful to someone who actually might work out what’s really going on.

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Progress on these disorders is extremely slow / non-existent. The Covid pandemic will slow it down even more, due to the economy etc.

I had a London NHS appointment a couple weeks ago. The assigned doctor had no clue about VM or PPPD - it was so bad that he had to escalate it on the spot and got the consultant (a well known doctor in this field but not specially in VM/PPPD- I wont name her) to call me, and she had no clue either. She simply referred me to someone in her group that is currently focusing on PPPD and knows more about the condition (knowing the NHS that appointment will be scheduled for summer 2021). It really is an absolute farce. So, I slightly admitted defeat after that fiasco and have started warming to the idea of medication because there literally is no other alternative.

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I took medication for 2 years of my last 5. I didn’t need it the rest of the time and I would chalk up my relatively speedy recovery (lol!) to NOT taking medication. I think it really helps in the opening chronic stages, but if you are lucky there comes a time when there’s fundamentally no overall quality of life difference being off or on it.

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Well let’s be grateful her best buddy wasn’t currently focusing on amputations without anaesthesia. Honestly that sort of referral is laughable. It’s a joke.

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This is why I opted against it, because this year I’ve had bad and OK phases - on average I’d say I’m in the 80-90% bracket. I can do everything a normal person would but I’m still slightly limited in certain areas of life (some of that being psychological rather than physical). Obviously medication brings with it nasty side effects so on balance, I decided myself that medication wouldn’t be of benefit.

Regarding your comment - do you feel your healing would have been quicker without medication? From what I understand, the medication is basically meant to give your brain a break and let it recover peacefully without the outside noise.

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Yes, that’s absolutely what I believe it does. It really depends on how severe you’ve got it. I had it so bad I was laid out with basilar migraines for 14 hours at a stretch unable to even blink at one point, every 3 days. This immediately resolved with Amitriptyline and I never had such horrific migraines again.

However, once physiologically things have started to resolve, the brain catches up and you don’t need them anymore imho.

Sure, things at this point are still uncomfortable, but at least your brain is giving everything it’s got (so long as it doesn’t go over the top!)

Of course, I’m male and there may be other physiological stuff going on in females which complicates matters, and its obviously very individual too … case by case.

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Its reflective of the wider systemic failings of the NHS and the country as a whole these days. NHS policy has turned into one of pass the buck. They send people home with painkillers or antidepressants for almost anything these days, and wish them good luck. Actually its systemic of western medication - they try to fix the symptoms, not the root cause.

In April I was due to fly out abroad to have a team of private doctors (from all manner of different disciplines) to review me and conduct a wide range of testing, to get a root cause analysis of what’s going on - but I couldnt due to Covid. Even seeing private doctors in the UK is incredibly frustrating for people with vestibular disorders. If you dont fight back, you can very quickly get lost in the system and end up with a poor quality of life. The NHS for example is giving appointments once or twice a year to people - for people suffering daily vestibular systems, that feels like a lifetime. It’s a disgrace.

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Interesting. How did you develop the view this view? Any articles/links/sources for it? Or just personal opinion.

The point I would raise is, how long should one wait with this condition? I’m 18 months into the journey and not tried antidepressants yet. I’ve reached the point where I cant cope with daily dizziness anymore, but I dont suffer from psychological issues. It’s obviously just naturally frustrating…

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Could not agree more.

I used to get angry, but as my condition has improved, this has tempered a little.

The problems are numerous. It’s so easy for a neuro-oto to see you for 30 mins, charge you £150+ and prescribe some old antidepressant. Incredibly poor value for money.

MAVers/PPPDers are an incredible productivity drain for society that you’d think it would get more focus, but then we are rare I guess?

see my rants on #research-theories-controversies, some of which are backed up by ‘science’, the rest is a personally developed model to fill in the gaps/gaping chasms. My personal opinion is summed up A note about my views. I’m convinced there is a physiological cause of the symptoms, and at least a common subset of anatomy that is involved.

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Country of destination? Where’s better in your opinion? Actually I can imagine a one word answer ‘Anywhere’ because the NHS in fact English medicine private even. Neither does Vestibular. They may as well just cross it off the medical dictionary index altogether. When it comes to Vestibular stuff I don’t have a good word to say for them. Nothing surprises me. You should read my own story. You could print it off and take it to read on your next long haul. It’s long enough thanks to the NHS.

It’s piece of string country. Yes but you shouldn’t think if them as antidepressants. You would only be taking about a tenth of the AD starting dose so it shouldn’t affect your mood. Tricyclic antidepressants are used off lable more these days than on. Nobody starts them for depression. They have been surpassed long since. They are regularly used for long term chronic pain, another off lable use.

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