I never thought that the mere act of getting out of bed, and going about my daily activities, would qualify me as “being brave”. But then again, I never thought that one day I would have Vestibular Migraines.
What are Vestibular Migraines you ask?
“Vestibular migraine is a variant of migraine in which instead of headache being the most predominant feature, dizziness is. Patients usually say that out of nowhere they got extremely dizzy and don't feel like they're on even ground. Some describe a spinning or rocking sensation. They have light or sound sensitivity and get nauseous or throw up. Episodes can last minutes to hours, and there's a chronic form where people have a constant sense of imbalance. In many instances, people have a history of migraine headaches before vestibular migraine “shows up”.
Imagine a life where almost every day it feels as if you are walking on marshmallows, or walking on a rocking boat, and at night, when you lay your head down to sleep, you feel like you are sleeping on a rocking boat. All. Day (& night). Long.
It didn’t start out that bad, but that’s where I am now.
My name is Kerry Murphy. I'm a 46 year-old female. I grew up, the 11th of 12 children, in an Irish Catholic family. My father died when I was 12, and my mom single-handedly raised us from that moment on.
Having a childhood, staged in such a way, led me to be quite an independent individual. It has been a quality, which I have always liked about myself. It was so freeing. I wanted to pass that on to my children.
However, I no longer possess this quality. I have lost a fair amount of my independence (for now). Not by choice, no, definitely not by choice.
I have been living with, what started out as migraines and BPPV (Benign paroxysmal positional vertigo), and then switched gears to Vestibular Migraines, for the past three years.
Long story short:
Back in January 2014, I experienced an “episode”, while in my car in a parking lot. Out of nowhere, I felt a flash of pain/pounding throughout my head followed by dizziness, and heart palpitations.
I had never felt anything even remotely like this before.
I called 911. The ambulance arrived, and I was taken to the hospital for an evaluation.
I was released that day, as all of my vitals checked out fine, and tests were negative.
Although I was released from the hospital, from that day on, I was shackled to a life of a migraineur… although, I did not know at that time that I had them, or what that would mean for me.
I’m calling this episode in the parking lot the “pivotal point” in my health, and life. Prior to that moment in time, I led a much fuller and active existence. I took life head on, and enjoyed every moment of it.
I have two amazing kids, and as the primary caregiver, and very much an active outdoors person, I always made sure we did plenty of things to get us out into the world. Life was amazing. Life was fun.
After the pivotal point, life lost its luster for me, because I had gained a new focus, and not one I would have chosen for myself. No longer did my thoughts consist of adventures with the family, amazing day excursions, and great times with friends, but with unmitigating brutality, migraines became the focal point of my life.
Not only do I have the symptom of feeling like I am walking on marshmallows, I am also super sensitive to light and noise. I can’t really bear it if it’s too hot outside, or too cold. Crowds and busy stores, with rows and rows of shelves, or racks and racks of clothes, can cause havoc on my vestibular system. Forget about going on rides at Disney, or any other amusement park. The mere act of walking around the park, or waiting in those zig zag, never-ending lines, is just a touch more than my vestibular system can handle some times.
I wear earplugs to the movies, plays, recitals, and Tai kwon do practice for the kids, even for things as little as helping in my child’s classroom. I forge through it all, because I can’t let these symptoms rob me of everything. I also have motion sickness, and I can often feel symptoms merely from walking, or moving my head too much.
I was once a marathon runner (covered 4 NYC, and 1 Philadelphia), triathlete, ski instructor. I heli-skied in British Columbia, parasailed and went skydiving. I climbed Machu Picchu on my honeymoon, carrying my husband’s pack, because he had altitude sickness. I flew to Ireland, rented a bike and cycled around, solo, for over a week. There was really very little I couldn’t physically do, and mentally I was game for everything.
Once a very fit athletic, and a person who truly loved life, I am reduced to hardly being able to walk for more than a half hour. Forget about riding a bike. At least one with two wheels.
I’m not revealing all of these things to be an object of pity, because I do know that in the grand scheme of things, I am lucky that vestibular migraines are all I have. I know many, many others suffer with much worse. I am revealing it, to shed light on the mystery of the migraine, in all of its many forms, because so little is really known about them, and there are so many people who suffer horrifically with them.
Yet, with all that said, I still have Hope.
I have not yet found the right medication for me. Migraines, particularly Vestibular Migraines (known as rare migraines), are slowly beginning to gain some attention in the research department. But there is still a lot to be done. This leaves those who have them with lots of unanswered questions and a willingness to try just about anything (including “off label” medications, those which are meant for other illnesses, but “off label”, can often help migraines).
So Hope, is what keeps me going. Keeps me looking for the magic, which will bring me relief, even just a little, but hopefully a lot more than that.
We (migraine sufferers) are one big community of hope, faith, care and concern--not unlike many of the other chronic type illnesses out there. There are online support groups, off line support groups, an abundance of articles, and literature written by sufferers, who are so very willing to share what they have learned, and what they have found to be helpful to them. I have just recently discovered many of these such groups, and find it very comforting. I am grateful for it.
As a group, I can now see that it is our hope that holds us up, and our Bravery that gets us out of bed every day, to fight another day.
We try to maintain a strong front, because it is who we are. We are not the migraine, and the migraine is not us. We are strong, and we are Brave, but just occasionally you will see Tracks of Tears, on our faces.
Tracks of my Tears - Smokey Robinson
People say I'm the life of the party
'Cause I tell a joke or two
Although I might be laughing loud and hearty
Deep inside I'm blue
So take a good look at my face
You'll see my smile looks out of place
If you look closer, it's easy to trace
The tracks of my tears…