By Kelsey Ott
When it all first started
New York City, November 2017: It was the week of Thanksgiving. Luckily I had a few days off of work as I came down with a really bad cold. Fever, chills, achy-ness, the whole shebang. I was so sore and fatigued that I couldn’t get out of bed at times. I vividly remember my eyeballs being really sore. It hurt to move my eyes from side to side or up and down.
That being said, none of this is unusual at all for the common cold. Sometimes they just take you down pretty hard! When I went back to work the next week, I sporadically noticed signs of something being off. But, I felt okay. My cold was gone and I didn’t have any lingering symptoms, from what I remember.
One day while sitting at my computer I turned my head to the side and it sort of felt like my eyes didn’t track well enough to meet up with my head movement. Also, I kinda felt unbalanced and like I was going to fall over. I chalked it up to the bad cold and kept on truckin’.
The symptoms randomly kept popping up here and there, so I took a stroll to the nearby pharmacy and told the pharmacist about the cold and my symptoms. He agreed that my symptoms were probably lingering congestion and suggested Sudafed.
During this week I had occasional split second bouts of unsteadiness. I started to have difficulty focusing on my computer screen. Scrolling through websites or documents was especially hard as it caused a lot of dizziness. Moving my head to the left right triggered the same sensation.
Let the parade of doctors and diagnoses begin
During one of my lunch breaks, I walked to an optician’s office and got my eyes examined. Who knows, maybe I just needed glasses?? My eyesight turned out to be fine, aside from a mild case of astigmatism in one of my eyes.
A couple days later at work, I walked down the hall to the ladies room and suddenly I just felt like I was trying to walk on a boat out at sea. I didn’t feel steady and all of a sudden the hallway ahead felt extremely daunting. Panic set in. I made it to the restroom but at this point I was very worried. How was I going to make it back down the hall? Was I supposed to just go back to my desk and continue working as if nothing was wrong?
I Googled a doctor’s office close to my house and told my boss I had to leave. I’d explain later. Luckily I got an appointment right away.
This doctor turned out to be a truly genuine and understanding person. Even though he couldn’t give me a solid diagnosis, I’m grateful that he helped me navigate the next few months of my crazy journey.
My doctor did some tests and told me I most likely had labrynthitis, a condition that often happens after contracting an illness, and can cause dizziness, unsteadiness, etc. He prescribed meclizine and said that I would probably have to just ride out my symptoms. He told me this condition was not uncommon. I went home and took the meclizine but it did nothing except make me drowsy.
My life starts to change
By this time I was starting to have frequent headaches as well. Now into December, I was still having occasional symptoms but I was still going about my day as usual. I took three trains from Brooklyn to Soho to work in the morning. At night I would usually walk home; trekking across the Williamsburg Bridge and navigating the 4.5 miles back to Brooklyn was the best way for me to shake off a stressful day.
As the days went by, I started to notice that it was harder for me to walk across the bridge. I would walk 20 minutes from my office and get to the base of the bridge, and I would look up as if gazing up at a monument that I had to climb. Just like that day in the office hallway, my routine walk felt incredibly daunting. My palms would start to sweat and my heart would race. One time I got to the base of the bridge and as I looked at it, it appeared as if the bridge was slowly getting wider and wider.
New, hard to describe sensations
It’s hard to describe the sensation but it’s like the opposite of claustrophobia. All of a sudden everything seems “too spacious” and the ground feels uneven and your legs feel unstable. The thought of walking across a widening bridge with my wobbly noodle legs was terrifying all of a sudden. What if my legs decided to give out halfway across?
Side note: when you live in New York City and you start to develop a “condition” and all the anxieties that go along with it, you feel as though no one will help pick you up if you fall. Even though you are surrounded by people 24/7. You become terrified of being the person who died on the sidewalk that no one stopped to help.
A fellow sufferer once described the dizziness/imbalance as a feeling of walking on marshmallows and as odd as that sounds, that’s close to what it often feels like. The ground feels crooked, slightly tilted, and you’re trying your best to walk straight, like a drunk girl at a bachelorette party.
Dizziness and vertigo are not terms that describe the sensations I feel well. I use the term dizzy often because it’s easier for people to understand. But unbalanced, unsteady, and lightheaded are terms that fit my symptoms better (and marshmallow feet).
Traveling through the anxiety of it all
Christmas was coming up and I had plans to fly to Florida to be with my family for a week. My symptoms were slowly getting worse and my anxiety was now escalating. I did not know what on Earth I was dealing with and needed answers before my trip. I went back to my GP and kindly told him that I really didn’t think I had labrynthitis. He referred for an audiology test and an ENT appointment. I did both and everything looked excellent. No inner ear issues. No answers.
As my trip grew closer, I was fearing the worst although not brain tumor. I wasn’t there yet. The worst fear was flying alone, into the unknown, physically and metaphorically. The anxiety started to mount again: What if there’s something wrong with my brain and the air pressure from the plane makes my head explode? What if my symptoms get exacerbated mid-flight and I have a full-on room spinning vertigo attack?
I wasn’t going to get through this trip without anti-anxiety meds. As ashamed as I felt, I had to have the talk with my doctor. For some reason I felt so gross and embarrassed asking for Xanax from my doctor. “I’ll only take it if I absolutely need it, I swear” as if he cared at all. Maybe it’s because I used to binge-watch the show called Intervention, but I felt like even if there was a hole in my head, there will always be a stigma around asking for meds. [Seriously for sec: DO NOT feel ashamed to ask for anxiety medications. My silly insecurities are mine alone.]
While I was in Florida, I felt like I had accomplished one hurdle, but had already started to worry about the flight back. I text-begged my doctor to call in an antibiotic for me “just in case this was all some sort of sinus infection”. I’d been doing some Googling…in my free time.
In Florida, I tried driving for the first time since my symptoms started and I did okay on short runs to the store. One day we took a two hour drive to visit my brother. While driving I started to feel as though my eyes could not keep up with the surroundings ahead of me. It felt as though cars seemed to be coming at me really fast and it was starting to play tricks on my vision. Nausea kicked in, too. I had only a couple of bouts with car sickness when I was a kid. This was very weird. I’ve never gotten car sick or motion sick while driving!
After that I made my mom drive everywhere as I just didn’t feel comfortable behind the wheel anymore. It really upset me. Driving had always been second nature to me. I had actually driven cross country the year before for my 30th birthday. What was happening to me?
Feeling desperate for answers
Back in NYC, my symptoms were constant. I was lost and desperate for answers. I never had relief from the unbalanced feeling and my headaches were a daily occurance. They ranged from manageable to debilitating. Medications were not helpful. My doctor suggested doing a CAT scan and it was then that everything started to become really scary for me. Up until then I was just worried about silly stuff like being too chicken to walk across a bridge. Now I was realizing that I could be facing something truly devastating and possibly life-threatening.
I had not one but two CAT scans and they came back fine. Phew. But now I was being referred to a neurologist, who was equally puzzled. He sent me for an MRI. During the weeks leading up to my appointment I became scared that I had multiple sclerosis. I started prepping myself for the diagnosis. Nothing else made sense, this had to be it.
It will never make sense until you’ve gone through it. As devastating as MS is, at least it was an answer. It was something I could tell people. Something people understood. Something I could start to research and plan for. What I had up until then was nothing. No answers. I had to explain to people what was wrong with me and describe my symptoms and every time I had to do it I felt judged, ashamed, pitiful and misunderstood. I wanted to strangle every person that said “it sounds like stress or maybe anxiety, have you explored that yet?” No. There was something very wrong with me and the more I researched, the less I knew.
The darkest days
No one understood. I was being passed from specialist to specialist and I wanted more than anything to not be going through this in NYC. Every doctor appointment that I had to Uber to became more and more scary. Every time I had to work from home I became more and more stressed about my job security. I started telling people that I just had really bad, debilitating migraine attacks just so that I wouldn’t have to explain my marshmallow feet or my anti-claustrophobia.
I had two MRIs. The doctors thought they “saw something” in the first one and needed to get a better look. Turns out I have an enlarged blood vessel in one of my ear canals. Oddly enough, I’ve been assured this has nothing to do with any of the symptoms I’ve been experiencing.
Back to the drawing board. I was referred to another neurologist who heard my story and said that I probably suffer from “silent migraine”. I was annoyed. I wanted to say “did you hear me? I am dizzy and unbalanced all the time! 24/7, it never goes away. My headaches are relentless. I can’t possibly be having a 4-month-long migraine!” But I politely nodded and left.
I gave myself a break for a while. The medical bills were piling up and I started to feel hopeless. On one hand I was elated that I didn’t have a brain tumor or MS, but on the other hand I was still completely in the dark. I didn’t feel like celebrating that one small victory and I definitely didn’t feel like I was out of the woods.
A glimmer of hope
A couple weeks later I found an optometrist an hour away who specializes in treating a condition called Binocular Vision Dysfunction. The symptoms listed were: dizziness, motion sensitivity, headaches, and anxiety in large spaces, especially with high ceilings. This sounded exactly like me. I had a few appointments and I got fitted for some eyeglasses with prism lenses. The optometrist did not see anything wrong with my eyes or my vision, but she was sure she could fix my problem.
I was told I would have to wear the glasses 24/7. From the moment I woke up to the moment I went to bed, my glasses were to be on. I hateddddd wearing glasses. I felt like they made things worse but I was determined to stick it out for a while. But after a few weeks I started to give up on the glasses. Nothing was changing and they only seemed to give me more headaches. I resorted to wearing them only when I drove, which I continued to do for about a year. Maybe they actually worked when I was driving or maybe they gave me a sort of false confidence, but either way, I wasn’t experiencing the motion sickness or field-of-vision disturbances like I had in Florida.
By late April, I had been taking taxis to work and home every day. I did not feel comfortable walking down the sidewalk or taking trains, so Uber became my primary mode of transportation. My closest grocery store was just a few blocks away and when I needed to stock up, I would work myself up into a frenzy. Walking down the street made me feel wobbly. Walking up and down grocery store aisles made me very dizzy, and my eyes had a hard time focusing on everything.
Uprooting my life due to invisible illness
In May, I left my job and moved two hours upstate. I found a job that paid well enough and that I thought would be easier on my chronic symptoms. And then I found an adorable cottage in the woods which became my little slice of heaven. My symptoms never got better but my stress level felt a little bit more manageable now that I was outside of the city. I was still having really bad days. Sometimes I would be so dizzy and unbalanced at work that I would leave early.
At the time my headaches got so severe and relentless that I thought my head would explode. Often I would get pain and soreness behind my eyes, and pressure in my temples and sinus area. I started developing floaters in my eyes during the summer of 2018, which have not gone away and may or may not be related to my symptoms. I almost always have brain fog. Sometimes it’s so bad I cannot remember words nor my train of thought. One time I even got motion sickness rolling out pizza dough for a dinner party (yeah, that actually happened). And I almost always have derealization and depersonalization, a.k.a Alice in Wonderland Syndrome. I’ve resorted to using a 1-10 scale to describe my daily symptoms either to a practitioner or in a journal. There’s no zero on my scale, by the way.
My life became about avoidance
Avoiding plans, avoiding friends, avoiding outings, avoiding social events. I didn’t want this at all but I knew that I could never expect to be feeling fine. On trips to Florida or when my family visited me in New York, I was secretly terrified. I hated not knowing how I was going to feel in five minutes, tomorrow, next Saturday.
During my Christmas trip to Florida in 2018, I found out what it was like to have real vertigo. On a night out with my brother, I fell backwards in a parking lot and hit my head on the pavement. The next morning I woke up in a pillow soaked in blood and the most vomit-inducing room spinning vertigo ever. Talk about being petrified to fly alone.
Post-concussion vertigo is no joke! For a month, until I could see a specialist and get into physical therapy, I would have horrible bouts of dizziness every time I moved my head to the side, bent over, got up from bed, and turned over in bed. It was AWFUL. Luckily one session of physical therapy to rebalance my “ear crystals” straightened me right out.
My turning point
A few months later in the summer of 2019, my family and I went to our tri-annual family reunion. And with my luck, I got a cold right before the trip. I ended up losing my voice and in addition to the cold symptoms, I had my #marshmallowlife symptoms to deal with.
I wasn’t the same person who had attended three years before. I was a shell of my former self and I didn’t have the energy to explain to 60 family members individually why I wasn’t engaging in any fun reunion activities or why I had given up a career in fashion for a simple life in a small town. Instead I withdrew and I pleaded with my inner self to make it through the trip without any major hiccups. I felt like a shadow that had shown up to the reunion. With the shame came extreme frustration.
And with the frustration came determination. I decided to post my story to an online health message board. What did I have to lose at this point? Within a day, I got a few responses but one stuck out to me. The person simply wrote back and said “It sounds like you have vestibular migraine. You should look it up”.
It took me 0.4568 seconds to type it into Google and VIOLA! This was it! After all that I had been through and after all the doctors visits and scans, an anonymous person on a message board diagnosed me. I finally had an answer!
Finally. A diagnosis, a treatment plan and HOPE
There are many emotions that go along with finding out that you have chronic vestibular migraine. Of course after reading every blog that I could find, I started to become a little sad. Most of the stories written were stories about “managing this for the rest of your life” and some of them had phrases like “after several years there’s still no relief”. I knew I was living with a chronic condition that might not ever go away or get better. Believe me, after almost two years, I had done plenty of dooms-day prepping. But overall I was relieved. I finally had a name, a diagnosis, a plan!
I could start seeing specialists and work towards a healing regimen. I might even find relief! Within a moment, I felt like I had everything. Never underestimate the power of one simple answer. And never underestimate the power of crowd-sourcing 🙂
I found a specialist for my vestibular migraine and we have tried a few treatments. And, I have an online community that helps with support for diet and lifestyle interventions that work along with the medications. I’m getting ready to try another medication that has helped many people debilitated by vestibular migraine.
My journey is ongoing. I’m not fully better, I’m not even close to 100% but I’m better than I was a year ago. And, I’m better than I was two years ago. If I have to put a number on it, I’d say I am about 50% improved. My life had been shrinking but it’s growing again and I’m thinking about ways to grow it more personally and professionally. As I like to say, I still struggle to figure out where I fit into my own life sometimes. But I’m so glad to be out of the darkness.
A few thoughts and resources from the Migraine Strong Writers
The writers here are passionate about serving the migraine community by educating, strengthening and inspiring hope from the patient and patient advocate position.
We are so thankful for people like Kelsey Ott and several others who have bravely shared their story to help others. The following are two more personal stories of vestibular migraine from our community:
Elice Johnson, Finding Relief From Chronic Vestibular Migraine
Heilean Rosenstock-Armie Vestibular Migraine Diagnosis and Treatment
The following articles from the Migraine Strong writers may help if you have been diagnosed with migraine or may think you have vestibular migraine. Please read what interests you. Then, take what you have learned and contact your healthcare providers for help in getting migraine in better control:
About Kelsey Ott:
Kelsey is originally from Florida and moved to NYC in her early 20s to pursue her dreams of working in the fashion industry. She now lives in Upstate New York, after nearly a decade of city life and the onset of Vestibular Migraine symptoms. She works full time managing a holistic pharmacy and wellness store. When not working (and feeling good!) she is usually hiking, fishing, skiing or binge-listening to podcasts.
Kelsey may be reached at: [email protected] or on Instagram @kelsey_ummm