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 (Balance Tests Seen Through The Eyes Of My Experience). 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 article for balance awareness week because people rarely seem to know what PPPD is.
Anyway, without further ado, on to the topic at hand, what is persistent postural-perceptual dizziness (PPPD)?
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 non-vertiginous 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).
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 its 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, the performance of tasks that needed precise visual focus (e.g., reading, using a computer), and exposure to environments with complex or moving stimuli (e.g. seeing repetitive patterns such as I saw during my balance tests; VeDA, 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 is a list of symptoms listed by VeDA (2014) and www.neurosymptoms.org (a site recommended to me at the balance clinic; Balance Tests Seen Through The Eyes Of My Experience).
- Persistent sensations of rocking or swaying unsteadiness and/or dizziness without vertigo lasting 3+ months.
- Possible discomfort in places with patterned surfaces.
- Symptoms are present on more days than not (at least 15 out of 30 days a month) with most patients having daily symptoms.
- Symptoms are typically worse with:
• Upright posture (standing or sitting upright).
• Head or body motion.
• Exposure to complex or motion-rich environments.
- 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).
Tests used to try and diagnose vestibular system dysfunction, such as MRIs (MRI: A Quick Post About My Anxiety Disorders And MRI Trip), tilt tests (My First-Hand Account Of The Tilt Table Test), etc, usually don’t show any problems with the vestibular system, at least structurally speaking. Thus, other tests are used to diagnose PPPD and other similar disorders. This is how I ended up at the balance clinic to undergo a series of balance tests (Balance Tests Seen Through The Eyes Of My Experience).
Again, the following diagnostic list was shared by VeDA (2014).
- 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.
- Active or passive motion of self not related to a specific direction or position.
• I was tested for this during my balance tests during test number 1 and 4.
- 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.
- Acute or recurrent peripheral (more common) or central (less common) vestibular disorder.
- 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.
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.
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).
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).
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.
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 its 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.
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 reappeared 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 black out. These episodes can last 40 minutes and leave you feeling really vulnerable. I 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 Experience Of The Short Synacthen Test (SST)).
I also have tinnitus that slightly affects the hearing in my left ear (Balance Tests Seen Through The Eyes Of My Experience), 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 is largely from the antidepressant group, then I’m concerned it’ll cause me to have a psychotic episode as they did before (The Unusual Link Between Drug-Induced Psychosis And My Anxietiess).
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 for my newsletter below. Alternatively, get push notifications for new articles by clicking the red bell icon in the bottom right corner.
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Unwanted Life readers.
For the articles that 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 and https://doi.org/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). About Vestibular Disorders. Retrieved from https://vestibular.org/article/what-is-vestibular/about-vestibular-disorders.
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.
39 thoughts on “What Is Persistent Postural-Perceptual Dizziness (PPPD)?”
This sounds like it is miserable to live with! I feel for you. I hope you are managing to stay well and hanging in there.
I’m so glad you did a post on this because I knew so little about it!
I’d never heard of it until I was diagnosed with it a couple of months ago either
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.
Thanks, it can be quite a pain to live with, especially as it’s stopping me exercising
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!
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
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
This was a very good in depth blog post, I’ve never heard of this condition it sounds awful to live with. Wishing you all of he best now though x
Pretty much no one has, but I guess that would be true with a lot of conditions
Gosh, you go through so much each day, I hope you are coping ok. It sounds so very tough. Thank you so much for all your research and proficiency in explaining what you’re going through. Here should you ever need me,
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.
That ear infection sounds like it was quite a lot to handle if it made you feel like that
Yeah it was intense! It only lasted a couple of days as it was picked up pretty quickly but I still remember it quite vividly!
It sounds like it would be something quite hard to forget
Wow… interesting topic!
It’s good that you shared this so we know too!
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!!
Sounds like you’ve had a pretty bad time of it trying to get to the bottom of your own problems too. I hope you’re now able to manage yours better too
This is so interesting! I’d never heard of this until now x
Not many people have
Great post. Really indepth and informative. This sounds like an awful condition – dizziness is horrible at the best of times.
It’s not great, especially the travel sicknesses and the inability to exercise
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.
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.
I’m very glad my post might have helped someone ?
Thanks for this post. I’ve been suffering with unexplained symptoms for a couple years now, and recently I’ve come across PPPD and even tho I have no diagnosis yet im 99% sure this is what I have. So I appreciate hearing your take on it.
I’m glad you found it useful. I’d advise getting a formal diagnosis so you can work thought your treatment options
Great explanation. I was diagnosed with PPPD in June and was very lucky to find an excellent vestibular physiotherapist and a counsellor to help me deal with my anxiety. I was very fortunate to have stumbled in to a correct diagnosis. For 6 months I was told it was just side effects from medication. I’m about 75 % better now and really can’t over emphasize to anyone who is dealing with dizziness or unsteadiness how much you need to be your own advocate. It’s a miserable way to live but there’s hope!!
It certainly is a hard condition to get diagnosed in you don’t live in an area that doesn’t have a dizziness clinic, at least that seems to be the case with people from a PPPD Facebook group I joined. I’m glad you’ve made such dramatic progress already
Suffering from pppd since last 3 years… don’t know how to deal with it..
Have you talk to your doctor about vestibular rehabilitation therapy?
Since 4 months I am on CBT and sertine 50 mg tablet daily two times. It is prescribed by psychiatrists . It was me who searched for my symptoms and I found this PPPD. Till then everyone was thinking it’s all in my mind. I will discuss about pppd in next appointment with my psychiatrists. I will update about my pppd journey. Thank you for creating this blog. This will be helpful for those who is suffering from pppd. Blessing for all who is suffering from pppd.
Althought your psychiatrist will take on board what you’re saying, this won’t be their area of expertise. You might want to see your doctor to talk to them about it and get a referral to a dizziness clinic or an ENT as they’ll be better suited to support you
Yes..but even ENT specialist could not diagnosed my condition before..l need to search another one. Thank you.
I too have recently been diagnosed with PPPD. My gps kept telling me it’s an inner ear thing or you’ve got vertigo or inner ear labyrinthitis. For two and a half months I was so anxious, I had symptoms most days and if not for a week I would think yus I must be better and then the symptoms would return and I’d go down the anxiety hole again. 4th gp referred me to a specialist and within three weeks I was seen and the specialist was amazing, straight away was able to say you’ve got pppd and explained it so well. I’ve since started amitriptyline and have found benefits from it for sure. Now I know it has a name and I’m not making it up has brought me a lot of peace. I still get anxious and have obsessive thoughts around my health but I am doing so much better. It’s nice to talk with other people who also deal with this on a regular basis. And also how migraines can be related and stress!
PPPD just seems to be one of those conditions that you really have to work for to get seen by the right people and thus get a diagnosis. But I’m glad to hear your doing better since being diagnosed. Were you also given a list of exercises to retrain your brain to recalibrate your balance system?