By Kayla McCain, VeDA Ambassador
While dizziness was definitely the symptom that changed my life as I knew it, light sensitivity and migraine aura wasn’t far behind it. For me, light sensitivity is often the first symptom to be aggravated, and it typically causes my “Alice in Wonderland” and dizziness to strike. Migraine is a strange disease, isn’t it? Symptoms related to the disease can also cause other ancillary symptoms – at least for me.
The other night, I had such a bad attack while sitting on the couch, it reminded me of a story of when I first got sick that I’ve been meaning to tell. (This story may trigger you, so read with caution.)
A ROAD TRIP DOWN A RABBIT HOLE
It had been about two weeks since I first came down with symptoms of vestibular migraine. I was still learning about this disease and was trying to push through the plans I had made that fall, one of those being a trip down to San Marcos, Texas, to watch my school, University of Idaho, play Texas State University in football. I had coordinated with a lot of my friends from Idaho who lived in the south for a fun weekend.
The morning before we headed down, I had my first MRI to see what was going on in my brain due to my dizziness symptoms. (They would later on discover that my MRI showed white matter in relation to migraine and that my skull was thinning near my ears, all which play a part into my diagnosis.)
Now mind you, it’s been two weeks of dealing with dizziness and the MRI honestly pushed me over the edge. The loud noises and bright hospital lights caused me to go into a full-blown attack, but at the time, I had no idea what was happening to my body. After stumbling out of the hospital, I remember pacing the parking lot trying to calm myself down. I didn’t know it at the time, but I was on the verge of having a major panic attack.
I pulled it together and got into the car to go on a road trip with my husband to meet up with friends. I have always been a social butterfly, and I didn’t want this to ruin my weekend. I could tell the minute we started driving that I felt “off” and kept trying to ignore it. Perhaps, it was the motion of the car that was causing me to feel dizzy, so I suggested we should stop to grab some food.
While sitting in the McDonald’s lobby, which was filled with bright lights and TVs, the room started to move slowly and I began to feel the panic seep into me. I felt like I was in a movie, and it was a scene where the camera almost circles the protagonist when they’re in a crisis. I remember grabbing a french fry and completely missed my mouth. When I went to look down to grab the fry, my arms appeared totally stretched out, and I had no concept of what was actually close enough to touch. The panic started to rush. I started looking around me to see if anyone was noticing me, and I remember seeing this old woman in the corner of the restaurant mumbling to herself as she stared at me. Was she able to see me freaking out in the corner? It had felt like I was suddenly floating outside of my body, and I was homing in on strange details happening around me. My light sensitivity had sent me over the edge and down the rabbit hole.
Freaking out, I told Marc that we needed to leave. I grabbed my food and decided I could eat in the car. Within seconds, the same thing happened again. I went to grab ketchup and spilled it everywhere because I suddenly had lost the ability to understand the space around me. What looked like something right in front of me, ended up being a few inches farther. I remember I started to cry because I thought I was losing my mind. Marc asked me if I wanted to turn around and I refused. I wasn’t going to let this defeat me. I had wanted to see my friends, we’ve been planning this for months, we weren’t turning around. The whole weekend would continue this way. It was the longest panic/Alice in Wonderland attack I have ever experienced. I remember praying if I went to sleep that night, I would wake up feeling fine.
The next day I couldn’t even feel my face as I was trying to put makeup on, all while pretending I was feeling completely normal. How would my friends understand that my arms and hands suddenly grew really long but only I could see it? It was a constant battle the whole weekend and could have easily been treated with medication and natural treatments if I knew what was going on with my body.
Still to this day, I have to mentally prepare to get in the car for a long trip. I know my VM is under control now, but I still have a fear that it will happen again.
MY EMERGENCY LIGHT SENSITIVITY TOOL KIT
It’s been a while since I have had an Alice in Wonderland attack. I’ve maybe had 10 episodes in my entire VM journey. However, my light sensitivity can also cause migraine aura so debilitating my whole vision goes gray, which is what happened the other night. These types of attacks used to make me have a full-fledged panic attack, (and still cause a little anxiety) but almost 5 years later, I know what is going on with my body. I take a deep breath and resort to my emergency tool kit.
The minute I see my vision is becoming cloudy or I see rainbow worms squiggle across my eyeballs, I pop on my light sensitivity glasses. They will provide relief enough for me to grab my medications.
The next step is to take my emergency meds such as Ativan and Timolol Eyedrops (The Dizzy Cook has a great article explaining how those help with VM.)
Lastly, I find a dark room and go to sleep. Once again praying, this will feel better in the morning. (I was just lucky this attack happened at night because Declan was already asleep.)
However, while it’s great that I have my “go-to’s,” they don’t always work. Yesterday I was dealing with hormonal changes, Dallas had severe weather and I hadn’t been sleeping well (teething baby.) I feel slightly better today, but the migraine “hangover” is still very real. I’m dizzy, feel nauseous, and exhausted.
The part that is craziest to me is that all my attacks always start with light sensitivity. I might have contributing factors like the ones I stated above, but 9 out of 10 times, it’s a computer, TV, or bright fluorescent light that causes me to experience Alice in Wonderland, a melting in the floor sensation, my “gray aura” or just my typical drunk dizziness that causes me to run into the wall. This is exactly why you will always see me wearing sunglasses, migraine glasses, or needing rooms to be low lit. It’s another reason I won’t be able to work in an office again. I can’t handle the light. Our brains are very sensitive and simple lights that are part of our day-to-day could be what makes everything go dark.