What Is Persistent Postural-Perceptual Dizziness (PPPD)?

What Is Persistent Postural-Perceptual Dizziness (PPPD)?

Because it’s balance awareness week, I thought I’d share some information about my disorder, persistent postural-perceptual dizziness (PPPD), so that others can be informed about it. Plus, it might help someone who recognises these symptoms in themselves.

 

After all, I’ve had this condition possibly all my life, but my problems were only taken seriously when I started seeing an autonomic disorders specialist. I was only seeing this specialist because a lot of my supraventricular tachycardia and inappropriate sinus tachycardia symptoms didn’t go away after taking medication that stopped my erratic heartbeat. It wasn’t even my cardiologist that referred me to this specialist, I was first referred to a neurologist, and it was the neurologist that referred me.

 

Thus, I was recently diagnosed after attending a series of balance tests (My Balance Tests). If I’d been listened to earlier, my quality of life might have been a lot better by now.

 

Thank you to my Twitter friend, My Vertigo And Me (a.k.a Jonathan Brewer), for informing me of this event. This allowed me to write this post for it, because people rarely seem to now what PPPD is.

 

Anyway, without further ado, on to the topic at hand, what is persistent postural-perceptual dizziness (PPPD)?

 

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History Of Persistent Postural-Perceptual Dizziness (PPPD)

 

PPPD is a very new disorder recognised by the medical community, reaching this consensus by defining its symptoms and diagnosis in 2014 (VeDA, 2014).

 

But before it became PPPD, the condition started as phobic postural vertigo (PPV). According to the VeDA. (2014), in 1986 two German neurologists, Thomas Brandt and Marianne Dieterich, created and described the condition based on clinical observations of patients who had nonvertiginous dizziness that couldn’t be explained by neurotology disorders at the time.

 

The symptoms of PPV included irregular unsteadiness triggered by environmental or social stimuli (e.g. a train moving past you at the platform) and postural dizziness without vertigo (Popkirov, Staab, and Stone, 2018).

 

What Is Persistent Postural-Perceptual Dizziness (PPPD)?

 

Next incarnation came chronic subjective dizziness (CSD). Work was done during the early 2000s to update the concept of PPV (VeDA, 2014). An American team led by Jeffrey Staab and Michael Ruckenstein, streamlined the previous definition of PPV, clarified its relationship with behavioural factors, and confirmed it’s core physical symptoms, and gave it a new name, chronic subjective dizziness (CSD; Staab, 2012).

 

Symptoms of CSD now included non-vertiginous dizziness and unsteadiness that was increased by their own motion, performance of tasks that needed precise visual focus (e.g., reading, using a computer), and exposure to environments with a complex or moving stimuli (e.g. seeing repetitive patterns such as I saw during My Balance TestsVeDA, 2014).

 

Thus, PPPD is made up of parts from CSD, PPV, and related disorders to create the new disorder, persistent postural-perceptual dizziness (PPPD; Popkirov, Staab, and Stone, 2018).

 

What Is Persistent Postural-Perceptual Dizziness (PPPD)

 

According to Popkirov, Staab, and Stone (2018), PPPD describes an acute dysfunction of the vestibular system and brain that produces persistent dizziness, non-spinning vertigo and/or unsteadiness. The disorder constitutes a long-standing maladaptation to a neurological, medical, or psychological event that triggered vestibular symptoms, and is usually considered within the spectrum of other functional neurological disorders.

 

The inner ear and brain that help control balance and eye movements are parts of the vestibular system (VeDa, n.d. a), and it is believed that it’s these two parts of the system that cause PPPD: at least in my case anyway. Although the pathophysiologic processes underlying PPPD isn’t fully known (Stabb, et al, 2017). This means PPPD is classified as a chronic functional vestibular disorder (Stabb, et al, 2017).

 

Symptoms Of PPPD

 

The following are a list of symptoms listed by VeDA (2014) and www.neurosymptoms.org (a site recommended to me at the balance clinic; My Balance Tests).

 

  1. Persistent sensations of rocking or swaying unsteadiness and/or
    dizziness without vertigo lasting 3+ months
  2. Possible discomfort in places with patterned surfaces
  3. Symptoms are present on more days than not (at least 15 out of 30 days a month) with most patients have daily symptoms
  4. Symptoms are typically worse with:
    • Upright posture (standing or sitting upright)
    • Head or body motion
    • Exposure to complex or motion-rich environments
  5. Persistent postural-perceptual dizziness (PPPD) typically starts shortly after an event that causes acute vertigo, unsteadiness, dizziness, or disruption of balance such as:
    • A peripheral or central vestibular disorder (e.g. BPPV, vestibular neuritis, Meniere’s disease, or stroke)
    Vestibular migraine
    • Panic attacks with dizziness
    • Mild traumatic brain injury (concussion or whiplash)
    • Dysautonomia (disease of the autonomic nervous system)

 

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Diagnosis

 

Tests used to try and diagnose vestibular system dysfunction, such as MRI’s (Quick Post About My MRI Trip), tilt test‘s (My Tilt Test Experience), etc, usually don’t show any problems with the vestibular system, at least structurally speaking. Thus, other tests are used to diagnosis PPPD and other similar disorders. This is how I ended up at the balance clinic to undergo a series of balance tests (My Balance Tests).

 

Again, the following diagnostic list was stated by VeDA (2014).

 

  1. Primary symptoms are related to body posture – symptoms are most severe when walking or standing, less severe when sitting, and minor or absent when lying down. 
    • I was tested for this during My Balance Tests during test number 2.
  2. Active or passive motion of self not related to specific direction or position.
    • I was tested for this during My Balance Tests during test number 1 and 4.
  3. Exposure to moving visual stimuli or complex visual patterns; performance of precision visual tasks (e.g. reading, computer).
    • I was tested for this during My Balance Tests during test number 4.
  4. Acute or recurrent peripheral (more common) or central (less common) vestibular disorder.
  5. Medical problems or psychiatric disorders that produce unsteadiness or dizziness.
    • I gave a detailed medical history for this during My Balance Tests during test number 1.

 

walking the line when you've got dizziness and balance issues

 

Treatments For PPPD

 

There are a few treatment options available for treating PPPD, so don’t think your quality of life might not be able to improve if you do suffer from PPPD.

 

Medication

 

Antidepressants

Such as: Tricyclics (including Amitriptyline, Imipramine, Trazodone)

www.neurosymptoms.org (the site recommended to me at the balance clinic; the page I got this information from can be found here).

 

SSRIs or SNRIs

SSRIs (selective serotonin reuptake inhibitors) and SNRIs (serotonin norepinephrine reuptake inhibitors) such as: Fluoxetine, Sertraline, Citalopram, Duloxetine, Venlafaxine, Mirtazapine, and Paroxetine.

VeDA (2014).

 

Neuropathic Painkillers

Such as: Amitriptyline, Duloxetine, Carbamazepine, Gabapentin or Pregabalin.

www.neurosymptoms.org (the site recommended to me at the balance clinic; the page I got this information from can be found here). 

 

Vestibular Rehabilitation Therapy (VRT)

It is an exercise-based program principally designed to reduce vertigo and dizziness, gaze instability, and/or imbalance and falls (VeDa, n.d. c). It works to desensitize or habituate patients to motion stimuli (VeDA, 2014).

 

Counselling

If caught early on, psychotherapy might be successful in reducing the chances of developing PPPD. For properly established PPPD, it isn’t a very useful form of treatment at all.

 

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My PPPD Story

 

In my case, at least, there’s a disconnect between the balance system of my inner ear and my eyes which means my brain is unable to resolve the conflicting information because the information it’s processing doesn’t match up.

 

I have discomfort with patterned surfaces, like walking over patterned floors. I also have persistent sensations of unsteadiness and dizziness without vertigo that’s been 24/7 for years, which can be made worse by scrolling on my phone, a train moving past me on the platform, and looking out of the window of a moving vehicle.

 

I don’t know exactly when it started, I used to struggle with really bad travel sickness as a child, but that stopped being an issue when I was a young adult. Then I started getting dizziness problems at my part-time job when I was at university, whereby I’d suddenly feel really ill and light headed and would have to sit down. It took me about 30 minutes to recover: that was around 2007. I sort help then, but my GP dismissed it, and it wasn’t a problem with anything else I did, so I stopped talking to my GP about it.

 

Falling

 

Then around 2013, I tried to start exercising which caused me extremely debilitating chest pains. A few months after that permanent dizziness, lightheadedness, and balance problems re-appeared and became 24/7. These symptoms didn’t go away with the effective use of beta-blockers to stop my chest pains, which is how I eventually ended up with an autonomic specialist.

 

Every time I try to exercise these symptoms will rocket up in intensity, which can cause my entire body to develop muscle weakness and, at times, cause me to blackout. These episodes can last 40 minutes, and leave you feeling really vulnerable. I’ve mentioned this before when I previously talked about the weirdness of my anxiety disorder, which you can read here if you’re interested in finding out more. But there’s also a chance that some of the issues I’ve just stated could be explained by my newly diagnosed reactive hypoglycemia (My Short Synacthen Test).

 

I also have tinnitus that slightly affects the hearing in my left ear (My Balance Tests), so this may be a factor in my PPPD as well (VeDa, n.d. b).

 

I’ve been recommended to try VRT first, and if that doesn’t work, then they’ll try medication. Although now I know the medication I might have to try are largely from the antidepressant group, then I’m concerned it’ll cause me to have a psychotic episode as they did before (Drug-Induced Psychosis And My Anxiety Disorders).

 

As always, leave your feedback in the comments section below. Also, feel free to share your experiences a dizziness disorder in the comments section below as well. If you want to stay up-to-date with my blog, then sign up to my newsletter below. Alternatively, get push notifications of new posts by clicking the red bell icon in the bottom left corner.

 

Lastly, if you’d like to support my blog then you can make a donation of any size below also. Until next time, Unwanted Life readers.

 

 

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References

 

For the articles I can’t find free access to I’ll provide the links to their abstract and provide their doi code so you can look them up. Thus, if you have education access, subscribe to the publications that own the rights to the articles, or have access to them through work, you can read the full article yourself.

 

Popkirov, S., Staab, J. P., & Stone, J. (2018). Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness. Practical Neurology, 18, 5–13. Retrieved from https://pn.bmj.com/content/18/1/5

Staab, J. P. (2012). Chronic Subjective Dizziness. Neuro-otology, 18 (5), 1118-1141. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/23042063 doi: 10.1212/01.CON.0000421622.56525.58

Staab, J. P., Eckhardt-Henn, A., Horii, A., Jacob, R., Strupp, M., Brandt, T., & Bronstein, A. (2017). Diagnostic criteria for persistent postural-perceptual dizziness (PPPD): Consensus document of the committee for the Classification of Vestibular Disorders of the Bárány Society. Journal of Vestibular Research, 27 (4), 191-208. Retrieved from https://content.iospress.com/download/journal-of-vestibular-research/ves622?id=journal-of-vestibular-research%2Fves622

VeDA. (2014). Persistent Postural-Perceptual Dizziness. Retrieved from https://vestibular.org/pppd

VeDa. (n.d. a). Possible Symptoms of Vestibular Disorders. Retrieved from https://vestibular.org/understanding-vestibular-disorder/symptoms

VeDa. (n.d. b). Tinnitus. Retrieved from https://vestibular.org/tinnitus

VeDa. (n.d. c). Vestibular Rehabilitation Therapy (VRT). Retrieved from https://vestibular.org/understanding-vestibular-disorder/treatment/treatment-detail-page

28 thoughts on “What Is Persistent Postural-Perceptual Dizziness (PPPD)?

    1. I’ve never heard of PPPD before so it was interesting to read about. Sounds like a horrible thing to have to live with! Wishing you all the best.

  1. wow I’ve not heard of this diagnosis before but i think someone I know has it, he hasn’t been able to go to school in 6 months and no one is taking his vertigo seriously. I hope you’re doing well!

    1. These kinds of conditions rarely seem to be taken seriously, unfortunately. I just got lucky by being referred to someone who has no issue with pulling in other experts, after being ignored about my problems for about a decade

      1. I know how you feel. I have hyper mobility syndrome and they struggle to do or say anything helpful. Mostly because there is no research into it, took a long time for anyone to take that seriously too

  2. How interesting – I’d never heard of this before but it sounds like it must be quite difficult to manage. I don’t experience frequent dizzy spells but I am one of those people who always goes a bit fuzzy when I stand up – the worst dizziness I’ve had was from an ear infection where lying down felt like standing up and standing up felt like I was horizontal but mid air (if that makes sense). Not fun at all! Hope you manage to find some relief from this soon.

  3. That sounds so frustrating to have to deal with on a constant basis! I also had terrible motion sickness as a child and I’ve noticed in some areas it’s gotten worse as an adult. I was having intermittent dizziness for a little over a year, and every doctor thought it was something different. Dehydration, hormones, my thyroid, low blood sugar, my contacts, all in my head, MS.. until finally after an MRI a neurologist diagnosed me with migraines. It sounded crazy to me at the time but now that some time has passed and some other things have come up with it – it totally makes sense. Sending positive vibes your way that your symptoms can be further managed!!

  4. Thank you for this post, really well sourced and explains the disorder really will. I have pppd and vestibular migration and have had it for nearly three years. I know how frustrating it can be dealing with the symptoms on a daily basis as mine is 24/7 and also having drs dismissing and not being aware of the diagnosis. I am on medication and have had vrt to no avail, but I continue with my life and I have found acceptance has being the best treatment for me. I still struggle with the anxiety of having a balance disorder and the hidden disability aspect but remaining positive I have found helps me to keep going.

  5. Thank you for this post. It describes exactly what I have been experiencing for the past 7 years since a whiplash injury. I may finally have an answer.

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