The Surprising Ups and Downs of Living with Vestibular Migraine

Camille MarksMy Migraine Blog, Share Your Story

The Winding Road: Ups and Downs of Living With Vestibular Migraine Disorder

I’d like to share my story about a debilitating neurological disease that changed my life, and who I am in hopes of bringing more awareness to vestibular migraine.

Reaching the Vestibular Migraine Diagnosis

The Winding Road: Ups and Downs of Living With Vestibular Migraine DisorderI was diagnosed by my ENT with vestibular migraine in May of 2016. It took 6 yrs to reach this diagnosis. This was the day I can say I was relieved but angry at the same time. I had already read about vestibular disorders, so I had some knowledge on it and was glad I could finally put a name to what I felt had hijacked my body. I was referred to a neurologist and sent home with a book titled “Heal your Headache” and started treatment consisting of a beta blocker, Propranolol, to start with.

For 6 years, I had been suffering and feeling sick most of the time. I had been seen by numerous doctors, had numerous tests, numerous diagnoses, and some misdiagnoses. To name a few: irritable bowel, celiac disease, Fibromyalgia, GERD, chronic fatigue syndrome, anxiety, depression, etc…

I knew that they were still missing something and began scouring the Internet looking at every single disease hoping to find something else I could validate. I felt hopeless and frustrated. I went from a carefree social butterfly to a person who couldn’t work or leave the house. I felt as though my body had been hijacked.

Below is a list of my symptoms:

  • Chronic daily headaches
  • Dizziness
  • Vertigo
  • Feeling of floating or “bowling ball head”
  • Nausea
  • Heartburn
  • Diarrhea
  • Vomiting
  • Fatigue
  • Neck Pain
  • Rib Cage Pain
  • Blurry Vision
  • Anxiety
  • Depression
  • Brain Fog
  • Heat Intolerance
  • Sensitivity to Light & Smell
  • Extreme Irritability
  • Agoraphobia

In 2012, I had an MRI of my brain, I was told I had a brain tumor called a meningioma and I needed surgery to remove it. I was shocked but relieved assuming that this is what has been causing my unexplained symptoms. Finally!

Unfortunately, that was not the case. In 2013 I had the surgery, which was successful, but my symptoms didn’t go away. They got worse, and I had pretty much given up hope. Not only did this not cure me, but there is a high chance the tumor could grow back. I was now living in constant fear and anxiety. I couldn’t leave the house and felt like I was living in someone else’s body. Why me????

My Life Post-Diagnosis

Quote by Camille Marks: "Vestibular Migraine Is A Debilitating Neurological Disease That Has Hijacked My Body"I want others to know that even though this diagnosis can be debilitating, there are many good things, important things, that come from having a chronic disease. Here’s a few of mine as I’m sure many of you can relate:

1. I’ve become aware of the simple things in life and enjoy every single one of them.
2. I’m more empathetic about other people’s pain and struggles
3. I’m grateful for the times I catch a break and feel ok
4. I’ve learned I’m a fighter and will get through this one step at a time
5. I’ve learned to say “NO” to commitments without feeling guilty ( this was a hard one for me)
6. I’ve learned to be “gentle” on myself as I’m doing the best I can
7. I’m learning to turn my fears into faith

There are so many beautiful things to see in this world. I have made a choice to focus on what I can do instead of what I can’t.

Finding a support group like My Migraine Brain has been life changing. I can’t imagine going through this alone. It’s extremely comforting to know there are others that truly understand the capacity of the disease and that we can share our stories, experiences, bring awareness, and empower one another through this journey one step at a time.

About the Author

Camille Marks

Camille Marks is a My Migraine Brain contributor who shares her story in hopes to raise awareness of vestibular migraine-- the debilitating neurological disease that has "hijacked her body." Camille's wonderful personality combined with her positive attitude make her a valued member of the vestibular migraine community!