PPPD (persistent postural-perceptual dizziness): symptoms, causes and treatment

Ménière's & Vestibular UK says people with PPPD often describe a sense of internal motion even without any movement of the body, like rocking or swaying as if on a boat, as well as unsteadiness, vibrations inside the body and walking as if drunk. Symptoms tend to be worse in busy or visually rich environments such as supermarkets but can persist even when lying in bed at night.

There may be difficulty concentrating, short-term memory problems and a sensation of derealisation (feeling detached from the world) or depersonalisation (feeling detached from oneself). One of the most frustrating aspects is that others cannot see the problem, so people often feel misunderstood or dismissed as being just anxious.

The name describes the condition. Persistent means the symptoms are there most of the day, most days of the week. Postural means they tend to be worse when upright or moving and better when lying in bed. Perceptual means it is something felt by the person, but not necessarily obvious to others. Dizziness is the word most patients use to describe the sensation.

Ménière's & Vestibular UK explains that in PPPD the normal filters the brain uses to suppress feelings of movement we do not need to be aware of go wrong, so a person can feel movement that should not be there. It describes it as a software disorder rather than a hardware problem in the nervous system, which is why routine examinations and tests are normal.

People most often develop PPPD following an insult or injury to the balance system, such as vestibular migraine, vestibular neuritis or BPPV, a medical issue such as a severe episode of low blood pressure causing dizziness, or trauma, whether physical or psychological.

Once it begins, noticing the sensation a lot can lead to hypervigilance, where thinking about dizziness or worrying about it turns up the volume on the sensation and starts a vicious circle. Anxiety is rarely a trigger for PPPD but can be a common consequence that perpetuates the symptoms, according to the charity.

There is no diagnostic test for PPPD. Because the physical examination and routine tests are normal, a diagnosis is made from the type of symptoms, how they change over time and what triggers them, using diagnostic criteria that clinicians refer to. A clear, positive diagnosis and explanation that you can work with is described as the first step in treatment.

Other causes of dizziness will usually be considered first. The NHS lists a range of causes of dizziness, including ear infections, migraine, dehydration, stress or anxiety, low blood sugar, anaemia and medicine side effects, and advises against self-diagnosis.

Ménière's & Vestibular UK says specific treatment takes time and there is no quick fix, but good recovery is certainly possible even after months or years of symptoms. Its recipe for success includes a clear positive diagnosis and explanation, understanding how the nervous system has become sensitised, recognising that symptoms such as dissociation, neck pain, anxiety, fatigue and poor concentration may go along with PPPD, and treating these as needed.

The sources read do not give a standard duration. Ménière's & Vestibular UK says treatment takes time and good recovery is possible even after months or years of symptoms, so it is a condition that can persist but that people recover from.

The NHS says to see a GP if your dizziness will not go away or keeps coming back, if you are finding it harder to hear or speak, there is ringing in your ears, double or blurred vision, numbness or weakness in your face, arms or legs, or other symptoms such as fainting, collapsing or headaches. New neurological symptoms need prompt assessment rather than being put down to PPPD. Your GP may refer you to a specialist if necessary.

On the NHS, start with your GP, who may refer you to ENT, audiology or a balance or neurology service, and vestibular physiotherapy and psychological therapies are available through NHS services, though waiting times vary. Private balance clinics, neuro-otology consultants and physiotherapists are an alternative route. Whichever you choose, look for someone who understands PPPD and offers an explanation, graded movement retraining and attention to anxiety.