Journey On: My Journey Living with Vestibular Migraine
Looking back now, my journey began 11 years ago on July 14, 2011. Little did I realize that my life would change forever on that day. I remember having a history of bad headaches on and off since college, but now I had begun to experience horribly intense ones. I will always remember the afternoon of July 14 when I was at work and a co-worker offered me a couple tablets of a generic ibuprofen to help combat yet another reoccurring and rapidly developing migraine. I left work as usual and wanted to make a quick stop and visit my parents. A patchwork of traffic and construction detours resulted in a frustrating roundabout route further lengthening my driving time and prolonging the constant throbbing pain of the migraine.
I approached and came to a stop at a traffic signal. Suddenly, without warning, something overwhelmingly powerful and horribly wrong took hold of me. There was the sensation of being aboard a ship and tossed about in a violent storm. I became very dizzy and extremely disoriented. My heart was racing. Was I having a heart attack? A stroke? I never felt so many new sensations at once. It was terrifying, and I barely made it to my parents’ home. My husband came and picked me up, and when I arrived at home my only thought was that all I needed was a good night’s rest and I’d be fine in the morning.
My World Had Changed
The morning arrived but I woke up feeling like my world had changed. I felt so off, as if I’d been drugged. There was an “out of it” feeling, a sense of “brain fog,” and a distortion of all my thoughts. My vision felt uncomfortable, strained, and I had difficulty concentrating. My legs were shaky and my sense of balance was way off. Outside the sun appeared so much brighter than ever before. Body movement felt exaggerated, and when I sat still I still felt motion – a constant perpetual rocking like being on a boat.
Little did I realize I’d be experiencing these unending symptoms for the next three years 24 hours a day! My first thought was that I had a brain tumor. I had no headache pain, but it was as though a light switch had been switched from having headache pain to dizziness and all the other awful sensations that came along with it.
Tests and more tests
Over the coming weeks and months I visited my primary care provider, a neurologist, an ENT, an eye doctor, a physical therapist to do VRT (vestibular rehab therapy), a behavioral vision doctor, a chiropractor and a neuro-otologist. All the test results came back normal! I was relieved about the test results but it also caused me to fall deeper down the “rabbit hole” because there weren’t any answers.
Inside I felt like I was dying! I began to develop feelings and emotions that I had never experienced before. Emotional feelings that were so real and raw. I felt broken, scared, confused, angry, sad, hopeless, and nervous. All this anxiety was developing inside of me because my body literally couldn’t determine its place in space and time. On top of all this, I felt like I was a complete failure as a mother and wife.
Eventually I visited a behavioral vision doctor who introduced me to a series of eye exercises which helped a lot in my recovery. I was able to work part-time and do most activities, although I still couldn’t drive. Three years passed, the symptoms were reduced, and I entered into a four-year remission.
It’s back! Challenge After Challenge
In 2018 the dizziness and “feeling off” returned again. By May, I was having an increased number of symptoms with increasing severity. The intermittent pain completely morphed to everyday dizziness, quick spins, constant head pressure and tightness again. This time around the symptoms were much more severe, and I wasn’t able to leave the house without feeling completely sick. I would remain ‘anchored’ to the couch for several months not able to leave the house and at times not even able to walk any distance without dizziness. I tried a new medication and initially felt better, but there were still difficult times leaving me completely debilitated.
Eventually January 2021 rolled around and the symptoms were still awful. I was in a dark place again after several ER visits and being told that no-one could help me. I lost all hope as the symptoms and severity were worse than ever. My vision was affected so severely that I couldn’t look out the windows of my house. Any movement made me physically sick, and I was housebound for one year.
A Breakthrough…I’m starting to heal…for real!
After finally finding the right doctor, I am truly starting to heal, although I am still on ‘The Journey.’ I began a new medication and have been doing things that I couldn’t do for a year. Looking back, it took an entire village populated with varied medical advice, physical disciplines, and medication, to make a difference. Now I realize that I am a much stronger person than I ever thought and I am an ambassador with VeDA. I see the world and living life in a whole new light, and it has become my mission to advocate and educate others about vestibular disorders. I want to help others navigate their vestibular journey so that no-one feels alone and isolated. We are all warriors in this battle, and you also are so much stronger than you think, so never stop fighting – you are worth it and together we will JOURNEY ON!
Marissa Aldrete is a VeDA Ambassador for the Vestibular Disorders Association (www.vestibular.org)
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