Persistent Postural Perceptual Dizziness (PPPD)
Key points: This is a condition with persistent sensations of dizziness inside the body (rocking, swaying, unsteadiness or uneasiness) that last for longer than 3-months. There is no nystagmus (eye-flickering) as seen in classical vertigo, but rather the dizziness can be described as in the head or whole body. People often report sensitivity to visual stimuli (crowds, computers). It may be worse when standing or sitting upright and can be exacerbated by head movements. PPPD is often non-responsive to physiotherapy or generic treatment for vertigo. It may be preceded by an acute vestibular incident such as BPPV or an ear infection but not always. PPPD clients express a debilitating concern and a strong self-judgment toward any dizziness or not quite right (NQR) sensations.
What is PPPD?
PPPD is a form of chronic dizziness that is not explained by injury to the inner ears. With this condition all medical test results can be normal. This can feel very frustrating when you feel ‘abnormal’ but it can’t be explained through the investigation process. Many people are told misleading comments like it’s all in your head. Yet this is a complex condition and a simple statement like that doesn’t help anyone to heal.
For PPPD there is no evidence of any physical damage to the brain or inner ear, so the diagnostic process is one of ruling out other conditions. Doctors will first investigate for Meniere’s, infections, migraines or BPPV etc.
In many cases, PPPD is triggered by an initial incident of true vertigo (with BPPV for example). However, once this initial vertigo is resolved the persistent dizziness remains. It is as thought the brain filters can’t reset and return to normal after the initial shock.
People with this condition describe their symptoms as persistent (present at least 50% of the time) or constant, 24/7 dizziness. It is upsetting for them and they feel uncomfortable on a daily basis. Some people will begin to avoid daily activities such as driving or housework because they feel so unsafe inside of their body. This truly is an invisible and debilitating condition if it goes unrecognised or undiagnosed. I have met many clients who felt like they were going crazy given that nobody could describe or explain their condition to them. This is very common for anyone with PPPD.
The PPPD form of dizziness may temporarily disappear while performing an engaging task or becoming focused elsewhere. However, when returning to normal tasks or stillness, the persistent dizziness sensations return. This phenomena is described as being context dependent. The dizziness is like a constant background fuzz that when noticed is ever-present and distressing. At worst, it can lead to avoidance behaviours, isolation and an ongoing cycle of maladaptive behaviours that reinforce the dizziness.
This condition and its diagnostic process can feel debilitating, frustrating and disappointing. Clients often report waking up in the morning with dread asking themselves: Is the dizziness still there? Has it gone yet? Am I still dizzy today? They describe living in fear of their symptoms and feelings of being a failure. Why aren’t I better? How come other people can recover but I can’t? The doctors and physiotherapists said I should be over it by now- what is wrong with me? These thoughts reflect a belief as though they have somehow failed at being normal. This is of course untrue and a total misunderstanding. PPPD is infact a series of normal misunderstandings between the ears, spinal chord, eyes and brain. The signals have been mislead and misfired. It is all reversible.
For this condition there is a strong link with anxiety and a subconscious underlying fear of the dizziness itself. The body sensations are perceived with a ‘fright’. The brain then responds with its normal and natural anxiety response exacerbating symptoms resulting in a loop of feeling dizzy-anxious-dizzy. The fear of dizziness and associated anxiety is quite natural and not a psychiatric condition. Almost everyone who feels dizzy experiences the associated shock and anxiety. It is appropriate anxiety within the circumstances. However, if left unmanaged it can delay the natural recovery process as chronic anxiety inhibits neuroplasticity. Overtime it can lead to increased anxiety and avoidance behaviours that perpetuate the PPPD condition.
For some of you reading this might be thinking ‘this is me! This is what I feel’. Gaining this knowledge and understanding about your body and the PPPD diagnosis can be very useful for helping you to move toward your healing. Sometimes we are handicapped by the diagnostic search for understanding and validation. This can impeded us from actually starting our daily neuroplasticity practice. So I urge you to get the best diagnosis you can, get medical clearance, and start to focus on your daily program. Start healing. Start retraining your brain to feel normal again. You will need to learn how to self-soothe the natural anxiety mechanisms and use neuroplasticity to reset normal sensations. It is likely that you have some strong belief systems that are subconsciously impacting your neural settings and these will need to be updated too. Your old beliefs can keep you stuck in the PPPD cycle. The emotional and ‘spiritual’ layers of healing are essential for preventing relapse of PPPD. By spiritual I refer to your capacity to believe in yourself and to have faith in your body (this is not at all related to religion).
Many clients are prescribed medications for depression and anxiety during the diagnosis process. Some people never receive a diagnosis at all. It is important that you listen to your body and work with medical professionals who you trust. You need to feel safe and able to move on from your uncertainty. If you are always chasing a diagnosis, you may never heal. In order to heal, you need medical clearance- not an exact understanding of your symptoms or diagnosis. For some people they never fully understand their diagnosis or symptoms. But they still learn how to heal it.
In summary, people with PPPD are feeling dizziness sensations (that may have started spontaneously with an ear infection for example) but the dizziness never resolves. This creates a normal emotional response of anxiety that impedes the neural repair process. So the initial dizziness resolves (the ear infection heals) but the remaining neural signals for dizziness sensations continue to fire. This results in persistent postural perceptual dizziness.
The more we focus upon these sensations, the more the brain re-fires them. So if we were to wake up each day and think “Am I dizzy? Is the dizziness still here? Has it gone yet? Will I be able to drive today?”, we are further stimulating the distress associated with the dizziness neural pathways in our brain and body. Thus, throughout the day the brain is putting a large amount of attention upon the dizzy circuits and it is being placed in the front of our attention so that it is in effect perceived as always there. Despite normal test results, the dizziness is there inside the brain firing along healthy neural pathways. It is a neural dizziness rather than an inner ear injury. It is like error signals or mistakes occurring within the neural templates of the brain.
Wherever we focus, we fire neurons. When we look for dizziness, we can find it. This is because the mapping of that sensation lives in our brain and we can activate it at any time. Similar to being in a dark room full of objects, we can only see what we shine the torch light upon. It is always there, but if it is in darkness we don’t notice it. Our attention becomes the source of our struggles and our solutions. For PPPD our attention is like the torch shining our attention on the dizziness and keeping it at the front of our awareness.
The dizziness signals are there in the background bouncing around your brain, ears, eyes and spinal chord. You don’t need to get rid of them or cure it. They are useless and harmless. A different way toward healing is to build stronger neural pathways that feel normal to you. For example you could learn how to put your attention and focus upon your desire to feel calm, steady or at ease. You can do this while feeling dizzy as these pathways are adjacent and can co-occur. Eventually the stronger pathways will override the dizzy ones so that you no longer notice them there. Your brain will learn that the dizziness signal are not important or dangerous and they will become filtered out of your awareness. My clients who learn to do this incrementally notice that their dizzy signals become weaker and weaker. They return to normal.
People with PPPD often feel that they are going crazy because their symptoms are not validated by medial testing. They often report that they feel that others don’t believe them. These clients can end up with referral to see psychiatrists or psychologists and they may be medicated with anti-anxiety or anti-depression medications to help numb the unwanted distress or panic that is within them daily. Please note that PPPD is not a psychiatric condition (read this article). As with any condition, PPPD can occur alongside any other diagnosis. This is known as a comorbidity and can further complicate the medical investigation process. Anyone with persistent dizziness is likely to experience a normal reaction of anxiety and depression. It is understandable and not abnormal.
People with PPPD become stuck in a cycle of worrying about dizziness, focusing upon dizziness, being anxious about dizziness and then refiring the neural pathways creating the dizziness. This is the maladaptive cycle I referred to earlier. The best way to heal this form of dizziness is to learn about how to break your cycle of worry by addressing your beliefs. You need to go deep into your inner world and shine a light on your personal belief system. There are many skills and tools you use to help you do this. You can learn to trust your body again. Practising the body scan with curiosity to what you feel is a good way to start. Consciously focus on areas of your body that feel at ease. The body needs to learn how to feel safe and steady again. This is not something that your logical brain can fix. You can’t tell yourself I am safe. Get over it. The anxiety parts of our brain don’t work in logic and they don’t speak English!
The ‘steady’ neural pathways can be activated by feeling them and focusing upon them. This is a very important skill that can be learnt at home. The ROCK STEADY Module 1 exercises begin here and guide people through this process. You can try the exercises in your ROCK STEADY program. It is recommended that you start with simple standing, sitting or lying exercises using wall and floor supports. Do not focus upon dizziness or ask yourself is it there? Instead, you are now focused upon feeling your centre and finding steadiness. Give yourself a new point of focus and make your brain work hard to achieve this focus. Your brain will then become occupied with the neural pathways for steadiness and this will become your felt experience. In other words, you can retrain yourself to feel steady. You literally learn to feel steady again and to strengthen those neural pathways within your body and your brain by practising it on your own. You can close your eyes in any position and try it now. Practise finding steadiness sensations in your body. Feel steady so that you can rebuild more steady neural pathways.
What to do and how to heal PPPD
First, be gentle with yourself. This has been a long process of diagnosis and you are most likely exhausted. Give yourself lots of rest, get support and take time to learn about healing with neuroplasticity. Remove any guilt or shame you are feeling about PPPD. It is not your fault. You have done your best. You are normal despite having this diagnosis. You are you. Healing is a process that you cannot force or push through. You need to be patient and invest time into it. Try the standing scan in the free Starter Kit or use the full ROCK STEADY PROGRAM.
As you do this sitting or standing scan, remind yourself that of course the dizziness signals are still there in the background. You don’t need to look for them or focus upon them- they are there and that is not going to help you or hurt you. Leave them be. The dizziness sensations are strong neural circuits that are firing throughout your body and brain. They are real and you are not imagining them! It is normal to be afraid of dizziness and you don’t need to judge yourself or get rid of it.
Shift your focus to your touch sensations in your skin. Feel the floor, your clothing or the wall if you are touching it. Stand with your feet wide and hands on your hips if that assists you to cultivate steadiness. Find it. Feel it. Focus on your real felt sense of steadiness. This lives inside of you too.
Steadiness is an antidote to the dizzy sensation. Practice utilising your touch system so that you can literally feel your steadiness and safety in your skin. Acknowledge the dizziness signals are in the background of your mind and allow it to dissolve out of your awareness. When we remove our focus from the dizziness, it becomes less important and has less neural firing. We want to now redistribute your attention, brain flow and focus toward your hidden physical and emotional sensations of steadiness. You can do this by shifting your focus to feel it in your skin. Your steadiness is already there (beside the dizzy signals). You don’t need to work hard for it. But you do need to find it!
Keep looking for steadiness sensations until you find them. You create these sensations in your body and your mind. As your steadiness neurons fire together, the steadiness neural pathways become stronger. As you do this more often, it becomes easier and more normalised so that you can feel steady 24/7 instead of dizzy, 24/7. You can see why self-belief is so essential. If you don’t believe in your body or your ability to practice finding steadiness, it is unlikely you ever will. Ask yourself: do I believe that I can retrain my brain?
If you think why didn’t I learn this years ago? remind yourself that these skills take time and professional guidance. If someone could have taught you this, they would have. Our knowledge and understanding of the mind-body connection has evolved over the years and many of your doctors or health professionals will not have had training in this healing process. I know many clients who had doctors say to them just don’t worry about it but the doctors didn’t know how to teach people to implement that advice.
Rewiring your neural pathways is something that you have to learn to do within yourself. Reading this article won’t create neural patterns for you, but by practising the exercises that you read and feeling your body with openness, you will begin to fire neurons differently. When you feel your body without fear or judgment, you can create new pathways. You can choose where you focus and how you speak to yourself. You are in control of your choices and your focus. This self-study process gives your more and more capacity to choose feeling normal again. Until you learn how to do it, the option never exists.
Keep going. Believe in yourself. If you tell yourself that you can’t feel or can’t find steadiness- you won’t. You are powerful and your mindset is powerful. Speak to yourself with kindness and be open-minded as you try new things. Feel your way from your feet up. Nobody else can do it for you. Only you can change your neural templates and you can do it whenever you feel ready.
Hot tip: Most dizzy sensations (but not all) are located in the head where we have so many bouncing neurons and emotional centres. It can feel overwhelming or distracting to focus on what you feel in the upper parts of your body- especially when you are first learning. Many people also feel strain or symptomatic behind their eyes. To start with, really bring your focus into your feet, legs and hips. Focus on your lower body. Feel your skin and muscles. Cultivate connection to your feet or legs by feeling the chair or the ground. Reconnect into your lower body and help get your attention away from the dizziness of the head.
Take your time. Stay safe. If this exacerbates feelings of anxiety for you to do it alone at home, you might want to consider getting private therapy to support you through this learning process. You don’t have to do it alone and it is not your fault- it just is. Find someone to help you rewire your neural pathways and use the ROCK STEADY program to offer you extra self-study guidance if you feel stuck.
PPPD RECOVERY CASE STUDY:
The vast majority of my private clients have PPPD. Their symptoms may have started with BPPV, vestibular migraine, MdD, or Meniere’s, but for whatever reason, it evolved into persistent perceptual dizziness. Between their vertigo episodes they report feeling constant rocking, pushing, pulling, dizziness.
These clients have often tried everything from everyone to help them feel better. They have seen multiple doctors, specialists, natural therapists, alternative health options and spiritual healers! They have tried it all but then they find me on YouTube.
The process of healing that I take them through gives them their power back. I teach them how to listen to their body and how to respond the changing needs of their body, mind and soul. In this process I strongly urge them to stop looking outside for solutions because their symptoms are not something that another person can resolve.
Ellen was short with me when we first met. She was sceptical that what I offered would work and she openly said that she had lost faith in her doctors and local natural therapists. I validated her fears and told her that I could not get rid of her symptoms for her, but that I could teach her how to feel normal in her body again using neuroplasticity. I could teach her how to rewire her own brain and body. She was willing to give it a go. She was willing to start a daily practice. She was willing to feel her sensations. She was willing to feel her emotions. She was willing to ask for support. She was willing to take on a 6 month program for intensive support.
Ellen couldn’t drive anymore but she wanted to. She loved animals and wanted to be able to take care of them without fear of her dizziness preventing her from doing more strenuous farm work or chores. She wanted to travel again and dreamed of going on overseas adventures in Europe with her husband. Ellen hated what she felt in her body and she was both depressed and anxious about it but seeing a psychologist hadn’t helped. Medication hadn’t helped. She was at her wits end and not ready to give in to it.
Once Ellen established her dreams, her goals, her values, her inspirations, and her desired feelings, we could create a daily practice for her. She committed 15 minutes a day to her practice, searching for her desired feelings and cultivating the neural pathways that she wanted to feel. She got better with practice and she began to feel better. I gave her skills and tools for working with her persistent doubts and sabotaging thoughts. She did written exercises to identify her limiting beliefs and she began to overcome them. She learnt about her balance system, her mind and emotions.
Ellen developed trust in herself, and built confidence in her capacity to heal by building non-judgmental skills, self-awareness, curiosity and by literally feeling her progress. After three months of private therapy her dizziness had resolved. She no longer had constant rocking sensations. She felt steady and tall in her body. She had faith in herself again and she had stopped looking for external fixes or cures. She was driving again and tending to her animals after years of being too afraid. Ellen was starting to choose new activities each week that she could add to her ‘can do’ list.
With time Ellen could do everything she wanted to do. She had returned to normal and booked a holiday. She now understood her fears, her panic, her avoidance, her anxiety, and her solutions to overcome it all. She had figured it out by listening to her body. She had reset her vestibular system and she now had excellent proprioceptive (touch) function to help feel at ease in daily life. Ellen took her power back and I encouraged her to set boundaries for herself physically, mentally, emotionally and spiritually to prevent relapse. Ellen used the ROCK STEADY process to heal her PPPD which she no longer has.
If you are seeking support for your recovery you may book an initial consultation or begin a self-study program.