Patient : " I am not sure if I can go out and walk by myself. I have this constant sway feeling . What if I fall ? This feeling is always there unless I lie down for sometime. This is so frustrating . I have not felt like myself for months. "
As a Vestibular therapist I listen to these struggles and recognize the impact it has on a patient. Typically a fit healthy looking individual in their late 40's or 50's , super efficient parent or a corporate leader is talking to me. Their appearance contradicts their struggles and how they feel . The need to perform as a parent or a professional makes them push aside the sense of sway/imbalance or dizziness until things start getting out of control.
The tipping point is where their life is suddenly consumed by doctors, specialists and loads of testing. Interestingly, this far in their journey our paths have not yet crossed. And when we do meet, what I most commonly hear is ," Why was I not referred to you before ? I am so glad to find someone who finally understands what is going on with me .
PPPD is one such complex diagnosis where a person senses lack of control over what is going on, nothing seems to work and it fosters fear & negative beliefs about recovery. And maybe this is why having to trust the therapist , committing to a prolonged therapeutic journey and working to change those dysfunctional beliefs seems intimidating.
Not getting the right answers, not having someone explain why you feel what you feel, misguidance about the diagnosis, working with non specialized therapists and the urge to find a quick fix further adds up to impact brain functional connectivity causing fear of movement and self vigilance.
Over years I have had great success with my patients with PPPD and here are some simple things I would love to share :
= After an acute episode of dizziness or vertigo, if you are not improving and especially having balance issues then time to ask your PCP to refer you to an ENT to get started.
= Having to consult with a Neurologist or a Neuro-Otologist to dive deeper is common as well and can be beneficial.
= See a Vestibular therapist right away while waiting for your other appointments. If you have positional vertigo then you get treated sooner. An experienced Vestibular therapist after a thorough evaluation can get you started on rehabilitation to fast pace your recovery as well. The earlier the intervention the less chances of getting that brain connectivity dysfunctional.
= Be an advocate for yourself. Also, talk more about your fears, doubts and beliefs. You will be surprised to discover the connection between dizziness and psychosocial factors like anxiety.
= Recovery can be a struggle but ask for support. It is common to work with a psychologist, engage in mindfulness practice and get prescription medications to enhance mind & body integration & stabilization.
= Visualize yourself being tranquil & calm on the bad days versus gearing up on the fight & flight mode.
= Put yourself first. Self compassion is a must.
If you would like to learn more about PPPD , below is a link