This article originally appeared in the Summer 2023 issue of On The Level.
By Megan Daly
with thanks to the Journal of Vestibular Medicine
Background
“Persistent Postural-Perceptual Dizziness (PPPD) is a chronic neurovestibular condition characterized
by subjective dizziness, non-spinning vertigo, and postural imbalance. Symptoms are typically induced by situations of visuo-vestibular conflict and intense visual-motion.” To date, there has been limited research on how PPPD affects patients’ lived experiences, so this paper focuses on the psycho-social aspects of PPPD.
Methods
6 people with PPPD were interviewed in a semi-structured fashion and were recruited from an Audiovestibular department in Wales. Each case is presented using Interpretive Phenomenological Analysis (IPA) and common themes are also presented in this paper.
Why Is This Important?
This study is important because it empowers patients to share and then validates their experiences. When patients feel validated and are inspired to share their lived experience, researchers gain more insight into how PPPD affects the whole person. Having a larger pool of participants allows for further research studies, which could help more easily identify symptoms of PPPD, find better ways to evaluate and diagnose PPPD, as well as enhance treatment options for PPPD.
How Does It Impact Patients?
This study impacts patients by listening to and validating their PPPD experiences. This gives patients the support they may not have received from a healthcare provider and can inspire them to continue to examine the identified themes in their lives. It may also inspire them to seek out other providers who are capable of providing the support and treatment that can enhance their entire lived experience.
Clinical Relevance?
This is relevant for all clinicians to stay updated on the literature and consider diagnoses such as chronic pain, endometriosis, and PPPD as possible diagnoses instead of dismissing symptoms as purely psychological. It is also relevant for clinicians to consider the psychological impact of PPPD on their patients and include this in their approach, examination, and treatment planning.
Discussion
Based on the individual interviews, there are five main themes that appeared. The table below explains each of these five themes.
| DISMISSAL AND NON-BELIEF | Most participants felt that they were not listened to, believed, or supported when sharing their symptoms with a medical provider who they went to in search of a diagnosis. There was also some gender bias presented with women feeling dismissed as having purely psychological symptoms. This is consistent with reports from other women who perceived this same behavior when seeking answers for different medical symptoms such as endometriosis and chronic pain. |
| IDENTITY LOSS | Participants reported that symptoms interrupted their ability to work, drive, and run errands, which impacted their roles as spouse, parent, or worker. However, most participants did not identify with being permanently disabled. The complexity of PPPD and the ability for people to get better indicates that there is significant fluctuation within this theme. |
| DISSOCIATIVE EXPERIENCES | Two patients reported this, with one patient having trance-like experiences. This may be unique to that individual since he also has a history of ADHD and seizures, making it harder to determine if this is associated with PPPD or not. Dissociative or out-of-body experiences have also been reported in the literature for vestibular disorders. So far this has not been reported by PPPD patients, possibly due to the stigma of disclosing these sensations. This also relates to the first theme of feeling dismissed and not believed. |
| PSYCHOLOGICAL WELL-BEING |
The participants reported that PPPD significantly affects their wellbeing with common themes of isolation, social withdrawal, fear, and anxiety. This has been reported previously in literature on PPPD, but this interview gives a more in-depth perspective on how PPPD affects psychological well-being. |
| PROCESSES OF SENSE-MAKING | Everyone in the study expressed their need to understand their symptoms so that they can explain it better and have a better overall understanding of how it affects their lives. Each person had a different explanation or understanding of their condition, often related to their background or field of work, but they all shared the theme of wanting to make sense of what was happening to them. |