Have you ever felt that the room is spinning? You know, that sensation we desired to feel when we were kids. That by turning in circles 100 times and flopping on the floor, a gut-tickling dizziness would be awaiting your fate.
Or maybe you know what it feels like to take one step after the other, but feel like you might walk into the wall. You’re probably thinking, “Yeah, after a few glasses of wine.”
Well, the sensation we can so easily create for ourselves has become my reality. A constant sensation of a spinning room, wobbly legs, unstable movements, aches and pains, numbness and tingling and a feeling where I might just pass out. It’s a level of dizziness that at times, prevents me from driving my car and has made it so I can’t hit the gym without feeling like I’m going to vomit. The only problem is I’m not drunk, and I didn’t just get off the swings at the fair.
I’m also slowly morphing into a vampire. My body is rejecting bright white lights and sound to the point where all I want to do is curl into a ball in a closet. Walmart at 1 P.M. on a Saturday has become a death sentence. Warehouse lights, never-ending aisles, and screaming kids all begin to cluster together like spinning stars above my head similar to a cartoon character that was hit in the head.
If I can’t be found, search the nearest dark room. It’s normal for me to have meetings at work in the dark or to find me hiding out in my cave of an apartment.
Hey, did I mention I hate bright lights?
An October Night I’ll Never Forget
All of this began in October 2016. A night at home watching a scary movie with my husband, turned into a horror well beyond the two-hour rental. What felt like a panic attack would soon reveal itself as a condition called Vestibular Migraines. A sensation came over me where I felt as if I was sinking into my couch as the room started to spin. My heart began to race, my face became numb, and I lost all control of my balance. Like any sane person, I thought I was having a stroke or a heart attack until I used my rationale to realize I’m a healthy 27-year-old, it had to be something else.
A few weeks went by where I felt as if I had been drinking wine to the point where I couldn’t drive. I was helpless. After months of appointments with several different doctors, I was led to believe I had a Sinus Infection, Benign Paroxysmal Positional Vertigo, Multiple Sclerosis (yeah, that happened twice) and Superior Semicircular Canal Dehiscence (SSCD). I underwent two CT scans, an MRI, and a full-fledged ear examination – hearing test, vision test, sound check, the works. When those tests came back negative for anything cancerous, my ENT introduced me to a condition they believed I had called Vestibular Migraines.
Vestibular Migraines only affects a very small portion of the population and is newer in the medical community; it’s also a type of migraine that can attack without a headache. So instead of being bogged down with pain, I experience constant dizziness, blurry vision, auras, and what I call “dirty vision,” which is referred to as floaters.
While it was a relief to put a name to my dizzy spells finally, it was a struggle for me to understand how you treat a “migraine” that’s not an actual headache. No – Advil, Excedrin, Triptans and pain meds don’t work.
Instead, there are a copious amount of pill cocktails prescribed to help rewire your brain chemistry and potentially stop the migraines from occurring. I was open to trying anything to make the dizziness sensation disappear and started with the first medication – Amitriptyline.
Amitriptyline became my worst enemy. I, of course, was part of the low percentage who had a terrible reaction to the drug. Can you say anxiety? The drug made me more anxious than I was previously, I lost clumps of my hair at a time, and it increased the sensitivity to my already ultra-sensitive light problem, and completely altered my emotions. This plan wasn’t going to work.
The next preventative to try was a Beta Blocker called, Atenolol. Now this drug I hear does wonders for people who experience all type of migraines. The only problem, I have asthma. Yeah, apparently this drug can cause problems with asthmatics, and once again I had a severe reaction. After a few weeks of feeling like I was breathing through a straw, I realized I needed to stop taking the drug and find a new solution.
Sink or Swim
So now what?
When you’re going through something that impacts your quality of life, it’s easy to give up hope. It’s easy to think you’re going to be stuck like this forever. I know, dramatic, right? I have a type of migraine. It’s not cancer or ALS, I’m not paralyzed, and I’m still able to be around the ones I love. The problem is that chronic migraines are so mind-debilitating it seems like nothing can ameliorate your circumstance. Not to mention, you feel like a prisoner in your spinning body, and no one can hear you screaming.
It also doesn’t help that I don’t have a visible injury. If my leg were to be broken, it would be a constant reminder to my friends and family that something is wrong and I’m not well. However, with migraines, it’s easy for people just to think it’s all in your head, but wait, it is, literally.
While I’ve exhausted my social circle reminding them that I am on a mental merry-go-round, it’s still easy for people to forget how you’re feeling and realize this isn’t a made up reality. I couldn’t even imagine how exhausting and time-consuming it would even be to keep up a “woe is me” charade. All I wanted was to feel like Kayla again.
After having this condition for a few months, I was terrified to tinker with any new drugs. And after my experience with Amitriptyline and Atenolol, I realized that something with my body needed to be regulated, but I was feeling pessimistic about my medication options.
But I’m a fighter and wasn’t going to give up.
A Beacon Of Hope
My first step to getting my life back on track was when my husband bought me “gamer glasses” that filter blue light. (Shout out to my husband, Marc, by the way. He’s been the most supportive person through this whole process.)
The glasses have made it so I can go to the grocery store, sit in my company meetings, work on my computer and function similarly as I did before. Sure I look a little nerdy, but these glasses have vastly improved my quality of life, especially at work.
The next life-changing move I made came from a book I found called, “Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain,” by David Buchholz.
This book has a plan. An actual plan for migraine sufferers like myself, and I do well with plans. It not only explains why our brains undergo migraines but how you can help prevent them.
You see, we all have a threshold of how many migraine triggers we can handle before having an attack. Some of us have low thresholds and others high. All it takes is for our migraine triggers to hit our threshold or to soar above for us to have horrible headaches, or in my case, dizziness.
Each step in the book helps build your threshold by incorporating things like exercise and yoga into your routine, and teaches you how to eliminate your triggers by avoiding certain foods, medications, etc.
After reading this book, I completely changed my diet. I removed Caffeine, chocolate, foods with MSG (which apparently is everything out there), bread, aged cheeses and meats, avocado, bananas, onions, nuts, beans, figs, raisins, and most alcohol. Yes, most alcohol. I found that organic white wines don’t have the sulfites that bother me, so I still indulge in wine from time to time.
Heal Your Headache helped in the diet triggers department, but it also advised me to get off birth control. And to this day, I am convinced it was the culprit to my problems.
After getting off of the Nuva Ring, my symptoms were cut by about half. And if you know anything about migraines, women are more likely to have them than men, which I believe is attributed to hormones. Since I stopped taking birth control, I only suffer one week out of the month from extreme light sensitivity, rather than a whole month of hiding in the dark.
Last Fall I was hopeless, depressed and felt trapped inside my body. “What did I do to deserve this?” “I treated my body so well, why me?”
That type of thinking had to stop. The moment I decided that I wouldn’t let this condition control me was when I began to find peace. I quickly shifted my energy from feeling sorry for myself to figuring out how to be proactive with my “new normal.” Changing my focus from “why me” to “what can I learn” became a game changer. I learned to be more patient with others and their problems, to be grateful for the good days, to feel appreciative of the life I have, and how I could take this experience and become a better person.
In March 2017, I finally saw a Vestibular Neurologist. He completed a series of dizziness tests and officially confirmed that I indeed have Vestibular Migraines, and am one of his youngest patients. I also learned that I had Vestibular Neuritis in November and because of stress from work, the condition lasted about 4 months rather than a few weeks like most patients. That said, my Vestibular Nerve was damaged and it’s unlikely it will ever fully heal, which causes my dizziness. Although I will have to deal with this for the rest of my life, it can be treated by reducing stress, anxiety combined with taking an assortment of vitamins and a few Kayla-friendly drugs.
This is my journey, and while I have my bad days, the good outweighs the bad. If you’ve just been diagnosed with this condition, I know it’s easy to lose hope, but your attitude is everything. Keep on fighting and continue to try new treatment methods, whether that is altering your diet, medications, massage therapy, yoga, acupuncture, Botox or even counseling to deal with your stress and anxiety.
It’s a battle, but a battle you can win.