When at first you don’t succeed…

susan warrior story

Susan's Story

Ontario, Canada

Age: 37-45

A little bit about my journey:

My Diagnosis

Chronic migraine, Vestibular migraine

Time to Get Diagnosed

nearly 2 years

Year I was Diagnosed


Sending Love to

Dr. Giammarco

Hospital I'd Recommend

St. Joseph's Hamilton, ON

This is my story:

I began having symptoms in 2006. I randomly began to experience strange symptoms such as vertigo, visual disturbances, nausea and a feeling that something was “off”. While at work one day, vertigo hit me with an intensity that I had never experienced before. It was a Friday afternoon, and I left to go home early. The spinning sensations, nausea, and eventually headache/head pressure persisted all weekend long. By Sunday, I was self-medicating with Gravol, and by Monday I visited my family Dr. My Dr. focused on my chief complaint which was vertigo. He explained I most likely had a virus and told me it would resolve itself in 2 weeks. It did not.
I returned to my Dr. in two weeks’ time, during which he hinted that I might have a disorder called Meniere’s disease and referred me to an ENT. My referral took approximately 6 months. During that time, I had to work, I had to function as best I could. I was prescribed Serc, and a couple of different water pills which are frequently used to treat Meniere’s disease, but ended up with severe potassium loss and low blood pressure that made me feel even worse. None of the meds I was prescribed did anything to treat my symptoms. I continued to self-medicate with Bonomine and Gravol, tried to work and function as best I could, but that took its toll on my mind and body and I began to have panic attacks for the first time in my life.
I finally saw an ENT, who did her tests (MRI, hearing tests, EEG etc). and concluded after a few months that I could have some type of inner ear malfunction, but it was not conclusive because my hearing always came back. I had also started to express during this time that I was having more visual issues, numbness down one side of my body, and other strange sensations. I was told “that’s neurological, I don’t do neurological” and was sent back to my Dr. without a clear plan or diagnosis. Further complicating things, my Dr. had retired in the meantime and I had to find a new one in a province that was/is experiencing a shortage of family Dr.s. I ended up seeing my husband’s family physician who referred me to a Dr. who specifically dealt with vertigo-type disorders. They did their share of tests and provided me with no answers as well. In fact this Dr. suggested that what I was experiencing was anxiety-related, nothing more. This made me angry. I did my own research, eventually learning about vestibular migraine which was a fairly new diagnosis at the time. I went back to my Dr. and asked for a neurolgist referral which took several more months. I knew at that point what I had. I had diagnosed myself, but needed confirmation. Long story short, the neurolgist I saw, and his resident confirmed that I had chronic vestbular migraine and began me on a course of preventative medication (A process that also took quite a while to be somewhat successful), but that is the short version of what I had to go through in order to get a diagnosis and treatment for migraine.

Let’s play 20 questions:

The song that keeps me going is:
Courage by the Tragically Hip
I never leave home without my:
Peppermint Oil
My go-to feel better movie is: 
The Sound of Music
If I was in the hospital, the celebrity I would most love to visit me would be:
When I need to relax, I:
Take a bubble bath
My favorite food is:
The quote that keeps me going is:
No feeling is final
When I need a laugh, I:
Call a good friend
Meet my pets (or favorite stuffed animal):
Winnie (golden retriever), Titus & Lucius (Siamese cats)
My hero is:
When I’m having a down day I binge watch:
Star Trek TNG
My favorite book to get lost in is:
Anything Horror
I want to be best friends with:
The thing I’m most proud of:
Working on my PhD doing migraine related research
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Doing my PhD
The most hilarious thing that has happened to me is:
It really means a lot when someone does this:
Sends me something in the mail
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
Practice acceptance and everything will be ok.
Words of encouragement that I’d give to my fellow warriors are
Practice acceptance and everything will be ok.
Follow my journey: @migrainescholarcanada

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