What It's Like to Have Chronic Vestibular Migraine

I have a chronic illness that not many people know about, or that some doctors don’t accept as an actual medical condition. I have what is called chronic vestibular migraine, and when people see the term “migraine” they associate it with a painful headache. However, vestibular migraine is a unique kind of migraine whose main symptom is not pain, but instead dizziness/vertigo.

If people were more observant, they would realize that when I walk, I can’t walk in a straight line, or that when I stand I never stand with my feet together, or else I will fall over. These are the only physical side effects of vestibular migraine that I show, but most of its effects happen internally. Vestibular migraine affects people in many different ways. Some people may have it for a duration of minutes, hours or days. The duration of my vestibular migraine is a little wonky. The easiest way of explaining it is that one week I have a vestibular migraine and then the next week I won’t have it, and then the cycle repeats itself over and over again. So essentially, two weeks out of the month I would have a vestibular migraine, while the other two weeks I don’t have a vestibular migraine.

It does sound great, having two weeks a month without an episode of vestibular migraine; however, this doesn’t mean I don’t have any kind of dizziness/vertigo. Like many with migraines, I do have triggers that will bring about dizziness. I have multiple visual triggers that cause me to become dizzy, such as reading, writing, watching something spin or rock back and forth, watching cars go by me, etc. Every time any of these happen I become dizzy and sometimes nauseous, and this can last for several minutes or even hours.

The challenge comes with being in school, where I have to constantly read and write, which slows me down more than others. For example, when taking a test it takes me much longer to finish than everyone else in my class. This is due to all the reading and writing that I have to do, which makes me dizzy. As a result, it takes me longer to think about how I am going to answer the question and causes me to write slower. I remember that once during my junior year of high school I overheard someone in one of my classes calling me stupid because I could never finish a test during the hour-long period. This made me feel frustrated because I knew the material just like everyone in the class, but I just couldn’t process an answer as quickly as everyone else. I wanted to go up to them and tell them why, but I knew it wouldn’t be of any use to do so.

On another level, just going to school during the days in which I do have a vestibular migraine isn’t always the easiest. I get up for school at 5:45 a.m., and when I am extremely dizzy and nauseous, it is sometimes too difficult to get out of bed. However, I do so and do my morning routine and then head off for school. When I am in class I try extremely hard to focus, but it is hard to when the room is tilting back and forth and spinning around you or you’re just experiencing the other feelings of dizziness which is too difficult to put into words. Walking the hallway is sometimes a nightmare; watching people continuously going by you – triggering your dizziness when you are already dizzy – is the worst. This causes me to either cut people off or walk straight into people, and on the inside I hope they won’t shout at me.

It isn’t school that is difficult, but life in general. I can’t have a driver’s license because it wouldn’t be safe for me to drive. Whenever I am in the car and see cars constantly going by in front of me it makes me so dizzy that I have to close my eyes in order to get rid of my dizziness, and this does not make for safe driving. Even going to the grocery store is difficult. There is so much visual stimulation as I am constantly looking at everything in the store and this causes me to become dizzy. No matter where I go or what I do, I will just become dizzy or my dizziness will become worse.

When it comes to friends and family it isn’t always easy to tell them how I’m feeling. I don’t typically tell my friends that I am not feeling good because I do not want to bother them with the information and I do not think they will really understand. On the days when I do not feel good I will pretend to act like everything is fine, for both my sake and my friend’s sake. When it comes to my family I am a little more open to telling them how I am really feeling, but there are still some days when I still pretend to be fine so that I do not worry them. When it comes to vestibular migraines I feel like I constantly have to put on a mask in order to remain sane. I feel as though others would not care to know what is really wrong with me, so in return I put on this mask to shelter myself. I sometimes feel upset with myself that I have to do this, but other times I know that is just how it is when you are living with a chronic illness.

Lastly, the hardest part about living with chronic vestibular migraine is that I often think about what my life was like before I had vestibular migraines. I remember when my balance was perfect, but now it isn’t the best. Now I walk differently and stand differently in order to remain upright. Now I can’t walk in the dark without any kind of lighting or else I will randomly fall. I remember when I used to be one of the first people in my class to finish a test, and now it isn’t like that anymore. I remember when I didn’t feel gross and sick all the time and could do anything I wanted without worrying it would trigger my dizziness.

However, even though I think about the past from time to time, this doesn’t mean I hate my life living with vestibular migraines. Living with it has opened my eyes to more of the world. It made me realize that people may act “normal” all the time, but it doesn’t mean that they aren’t going through some kind of challenge in their lives. Thanks to the vestibular migraines, I am the strongest I have ever been.

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