From Undiagnosed To Migraine Advocate: Vestibular Migraine Journey

vestibular migraine journey

This guest blog post is courtesy of Alicia M, a wife, momma, a very dear friend, and a migraine advocate. Having a chronic migraine can be very lonely and isolating. I know that because I was there 3.5 years ago. When I developed chronic migraine during my pregnancies I thought that I was the only one who was struggling with the dreadful daily pain. Finally, I discovered the power of social media and was genuinely shocked that I was not alone and that there were so many others who live with chronic migraine. I first met Alicia in a migraine Facebook support group. Back then, we were both broken souls trying to find our way. And here we are now, all these years later, taking control of chronic migraine, rocking motherhood, and spreading migraine awareness. I hope you love her story as much as I do. I hope it makes you feel less alone. Because even though migraine can make you feel lonely, you are not. There are so many of us here for you.

To meet other parents with migraine, join my Facebook support group.

My Journey Without Proper Vestibular Migraine Diagnosis  

I suffered my first migraine attack when I was just 14. As a young teenager, this was quite distressing. As time went on, my attacks morphed and changed their tactic as migraine always does. I suffered well into my 20’s. Before I had my daughter there were consecutive days when I was unable to get out of bed during a migraine attack, as the fatigue was intense and the pain even more horrendous.

In 2008 I woke to the room spinning. This story is common for those of us who also suffer from what is commonly known as vestibular migraine (VM). At the time I wasn’t that worried as I have previously had bouts of vertigo but always returned to normal. After this episode, I never went back to my baseline and I can still pinpoint the exact time and day that this new journey commenced. I was at the height of my career and over the next few months, I visited many GP’s, specialists, an ENT, hearing clinics, and a neurologist and was diagnosed with vestibular neuritis and migraine. I felt like I was going a little bit crazy. How could the professionals not understand the vestibular migraine symptoms I described? Was I making this up? How would I explain this to my friends, family, and coworkers?

Losing And Finding Hope

I have to say after I saw all of these specialists and without a correct vestibular migraine diagnosis, I lost hope. I became a recluse and felt alone. I felt more alone than I ever have in my life and most of all I felt hopeless. I went to work every day with everyone continuously asking me if I was ok; I wasn’t! It wasn’t until I met my lovely elderly neighbor who was a reiki and reflexology master. She told me that what was happening to me involved my inner vestibular system. We worked together for a year before we moved house to calm down my vestibular system.

During all of that time, I did not have a formal vestibular migraine diagnosis, but I had a lot of its symptoms. My journey has been long, complicated and I was hopeful that I would find a diagnosis in the not too distant future. 

That year, in addition to medication, diet changes, and lifestyle changes, after around 18 months I felt like I was becoming myself again. I was not quite at 100% but about 85% of the way there.

As the next few years passed me by, I finally felt like I had a handle on things. I got married, I was able to fly again, drive, and visit shopping centres (lights have always been an issue for me and still are). It was almost like I had healed my body into remission.

Motherhood and Migraine 

 In 2013 I found out I was pregnant with my daughter. Like any expecting parents, my husband and I were over the moon! However, this was short-lived as the ‘morning sickness’ came on hard and strong and turned into a 9-month long hyperemesis gravidarum (HG) nightmare. I have often wondered if there is a correlation between vestibular migraine and HG sufferers.  

After the delivery of my daughter, I had never felt more rocking and swaying. I honestly thought I would never be able to hold her without falling over. I believe this was triggered by the hormones and the drugs I received for the induction of labor. I used the pram a lot of the time as my walking stick. This way I felt like I had something to hold onto if I was going to fall over.  

I knew that I needed to give my body time to heal. I started taking my preventative medication again. Thankfully after around 6 months, I started to feel like my symptoms were subsiding.

My Current Treatment Plan 

These days I have been under the care of a great neurologist here in Perth to treat my chronic migraine, I am on several preventative medications to manage my chronic migraine condition as well as getting occipital nerve blocks every 3 months to assist with the muscle contraction. I have gone from having over 15 migraine attacks a month to only having 4-5. I still experience a daily persistent headache, and managing my pain is tricky to ensure I do not go into a rebound headache cycle.  

One month ago, I finally received my awaited vestibular migraine diagnosis. According to American Migraine Foundation, vestibular migraine affects up to 3% of the adult population. The diagnosis was finally the validation of my symptoms that I needed for many years. I can now focus on working on a vestibular rehabilitation therapy (VRT) plan moving forward, something I am very eager to get started. 

Migraine And Motherhood

Navigating the chronic illness world is exceptionally difficult while being a mother. The guilt that comes with our limitations and the days when we are unable to move is like nothing else. But I am learning to be kinder to myself. I have learnt along the way that we need to try and focus less on the negatives and more on the positives. The bad days and fog will pass, and then the good days become amazing memories that we store in our hearts. If it were not for my chronic illness, my daughter would never have the compassion and empathy that she now has as part of her 5-year-old personality. She is resilient, tenacious, and gives the best back rubs and for that, I have my chronic illness to thank.

Migraine Advocacy

“The more we share our stories the more people we empower, the more hope we give to those who need it, and the more hearts we touch.”

As a migraine advocate, it is so important to me to raise awareness of this chronic debilitating illness. I have lived in silence for far too long and that is a life that I want to leave behind. It amazes me how so many people still do not know the difference between headaches and migraine and this perpetuates the stigma of the disease.  I want to show other sufferers that over time you can heal, that everyone’s journey looks different, but even in your deepest darkest hour when it is hard to see out, you are not alone.  The more we share our stories the more people we empower, the more hope we give to those who need it, and the more hearts we touch. We need to educate and advocate for every single person who has ever suffered from a chronic illness to make sure they never feel alone, unworthy, or hopeless. You are not defined by your illness. Just because you don’t look sick it doesn’t mean you aren’t sick. These are the two mantras that I live by.

I started my advocacy account on Instagram to offer guidance and strategies to others in the migraine community but most importantly to give hope and support that you can have a chronic illness, have a career, raise children and still have a full life. I am living proof that it isn’t easy, but it can be done.

Alicia lives in Perth, Australia with her husband, daughter, and a cocker spaniel. She has chronic migraine, chronic fatigue syndrome, and vestibular migraine. She is a VEDA Ambassador. She loves to spend time with her family, cook, do yoga, sew, and study family genealogy. Say hello to her on Instagram at @mrs_migrainetastic.

A mother's journey who after twelve years finally received a vestibular migraine diagnosis.

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