“Coming Out” With Vestibular Migraine

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An Open Letter to My Family & Friends About Vestibular Migraine by Jessica Jones

An Open Letter to My Family and Friends

An Open Letter to My Family & Friends About Vestibular Migraine by Jessica JonesInstead of opening a gift for my birthday, I want to open up about something. I have a chronic vestibular disorder.

I’ve unknowingly been suffering from migraines that have been damaging my balance system. I’ve been living with constant unsteady vision since 2011, and become increasingly prone to vertigo and motion sickness since I can remember. This condition has effected my entire physiology.

Migraineurs don’t just lie in a dark room for hours or days and then return to normal. There are many different types of migraines and seemingly endless ways to suffer from them. Migraines are not just “the worst headache ever” accompanied by nausea, they are neurological events, that begin much like a seizure, resulting in “altered vascular and neural processes” that injure ones brain. That’s right. Migraines cause permanent brain damage. Some even show up as strokes in brain scans. Mine don’t show up on any tests, so diagnosis took 18 months, a dozen doctors, 1 faulty diagnosis, and a lot of trial and error. I’m down to 5 physicians, I need occupational therapy, and I’m being watched for glaucoma. I’ve maintained my sanity and accumulated outrageous medical bills.

I’m sharing this because it’s irresponsible not to promote awareness. Migraines really need to be rebranded. Even my neurologist understood my reluctance to accept the stigma. June happens to be migraine awareness month, so I’ll be sharing more over the next week, in hopes of inspiring compassion for others with “broken heads” like mine, and encouraging others to seek preventative treatment.

I’ve found support on Facebook, and connected with a blogger who believes in my ability to put my new life into words. Like her, I’ve already begun helping people, which is true to the person I’ve always been. On her page, she asked, “What’s the single most frustrating aspect of living with vestibular migraine?” To which I replied, “The breakdown of communication between my brain, body, memory, senses, and emotions. I look like me, but not all of me is functioning simultaneously, not ever.” It’s exhausting, but then again, it’s always been exhausting to be me.

A huge shout-out to everyone that has listened to and supported me so far, and next time you see my husband, give him a pat on the back. Nobody has ever believed in me more than he does, and he has adapted to my exceptionalities beyond measure. What a man!

About the Author

Jessica Jones

Jessica Jones is a My Migraine Brain contributor with an incredible knack for expressing her thoughts, emotions, and experiences in a way that's bold and sincere, just like she is! Jessica shares her story to raise awareness of vestibular migraine and the massive impact this illness has had on her life.

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If you’d like to share an aspect of your life in living with vestibular migraine– anything from how you reached the diagnosis to what day-to-day life is like when living with this disease– then shoot us a message via our contact page!

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