Living With Vestibular Migraine: Sarah’s Journey to Diagnosis and Advocacy
For Sarah Thorsteinson, vestibular migraine began with a frightening feeling that the world was spinning beneath her. What followed was nearly two years of searching for answers, major changes to her career and daily life, and years of learning how to manage migraine and persistent vestibular symptoms. Sarah shares her experience with diagnosis, treatment, identity and the importance of advocating for care.
The First Signs Something Was Wrong
When out for a walk with a friend, Sarah Thorsteinson experienced a distressing sensation. She felt like the world was spinning and she was falling. Sarah chalked up these strange sensations to be symptoms of a bad bug that had already infected her colleagues. She ignored the symptoms only for them to continue to get worse. Sarah was unable to drive or close her eyes in the shower. Any quick movements in front of her, such as children running or a dog going past, caused discomfort and dizziness. She felt like she was walking on sponge-like, marshmallow surfaces. Gazing at busy visual patterns such as striped shirts or venetian blinds made Sarah feel nauseous. It was unbearable. Soon afterwards, she started to experience excruciating pain in the top of her head which she knew was migraine.
A Long Road to Answers
This was almost 8 years ago when Sarah started to feel like she lived in a carnival funhouse. She was bedridden for a few years and tried many different types of medications to try and ease her symptoms before the newer anti-CGRP became available. The timeline to reach a diagnosis for her dizziness was very long, almost two years. She had to rule out all other diagnoses and waited quite a while before she could see an ear, nose, and throat specialist.
Finally, Sarah was diagnosed with two types of migraine- classic and vestibular. Migraine is a chemical and electrical phenomenon in the brain and Vestibular migraine (VM) is a subtype of migraine with vestibular symptoms (i.e., dizziness, vertigo).
Treatments, Therapies, and Trial-and-Error
To treat her symptoms, she takes 3 oral medications, an IV infusion for migraine, and Botox. She also receives radiofrequency neuromodulation in her neck; which is a non-invasive treatment that uses heat to stimulate the nerve to calm down the misfiring from migraine. Sarah participated in vision therapy which trains the visual sensory-motor system to improve her dizziness and vision. She also does vestibular physiotherapy exercises to help reduce the dizziness.
Grieving a Career and Sense of Self
Not only was Sarah trying to manage symptoms that altered her everyday living or ability to live, but she was also managing a loss of identity. Sarah had been a nurse for 20 years, a career she was strongly connected to. It took quite some time for Sarah to come to terms with the truth that she was no longer able to work. While she was off work, she really wanted to go back to work and never imagined that migraine would cause such a deviation in her life for the plans she had set out. She believes that if she had more knowledge and resources, she might have fought a bit harder for more help sooner, but at the time, she barely had enough energy to shower, let alone advocate for herself.
The Emotional Toll
Living with an invisible disease is challenging; it’s been one of the biggest impacts for Sarah. It can be challenging for people to understand her experience. If they haven’t been through something similar, it’s hard for others to understand how you feel. Thankfully, she has a family that understands her symptoms. She does not go out as often as she used to and finds herself cancelling plans often, which she hates doing. She at times gets exhausted and irritable, especially before a migraine, but this is to be expected from someone who has vestibular symptoms all of the time.
Building a Life Around Management and Care
Sarah lives a very structured life in Sechelt, BC; a lot of her time is centred on managing her illness. She drinks plenty of water, gets good rest, and keeps a consistent schedule. Along with medications, she gets massages, physiotherapy, Intramuscular Stimulation, acupuncture and wears Cefaly, a wearable FDA/Health Canada approved device for those who live with migraine. Her nursing background allows her to research migraine extensively and find alternative supports for her symptoms. She practices mindfulness such as deep breathing, yoga, and stretching. She tries to move daily and has found that morning cardio has been very beneficial.
The Importance of Advocacy and Support
When her vestibular migraine started for Sarah, Migraine Canada and access to a Canadian Migraine community was nonexistent. She was without Canadian resources and support. She found Facebook migraine support groups helpful. One of her biggest regrets was not pushing harder for a diagnosis and early treatment. She often felt stigmatized and dismissed by the physicians she saw. Sarah encourages everyone to not be afraid to advocate for themselves. If someone experiences symptoms that make advocacy hard, then ask someone to help advocate on your behalf, sometimes we need help being heard.
