By Therese Pitman, Guest Contributor, Division One Athlete and Graduate Student
Many people believe athletes, like me, are indestructible. We train every day for long hours and monitor our food intake. So yes, of course, we are in great shape. However, that doesn’t mean we don’t have some physical constraints or sometimes debilitating moments. Unfortunately for me and those athletes who are also migraine warriors, this experience isn’t a one time or a couple month or year-long rehab. Managing migraine is a daily, conscious effort to try to be okay.
I consider myself a professional at mastering being okay when I’m not. That is not to say athletes who get injured don’t suffer immensely because they do, and in more than just the physical sense. However, it is difficult for people with disorders and diseases to see that light at the end of the tunnel.
My invisible, neurological, ever-present disease
What many people don’t know about me, or possibly don’t understand entirely, is that I have migraine with aura disorder. I live with this ever-present and persistent neurological disease. Even when I am not experiencing an attack, I feel the effects of this lingering shadow. It most certainly defines how I choose to conduct my life and how I experience the world through all of my senses.
Migraine is not just a headache. Absentmindedly throwing around the word “migraine” to mean headache is inaccurate and inappropriate.
My mother tells me when I was an infant, I would become upset and cry if the temperature in the room I slept was one degree off. Change it back to the exact temperature I preferred, and I would settle down, pinning me with the nickname, “Weather Bee”.
As an adult, storms and rainy days make me a bit nervous. The barometric pressure changes that come and go with the shifting of seasons tend to be a common and uncontrollable trigger for many with migraine.
Experiencing my first true attack at the age of 13 is a vivid memory, one I will never forget. A moment I am sure my mother will never forget either. She and my grandmother both have migraine with aura disorder, too. Seeing your child suffer from the same pain you’ve experienced yourself, and understand you passed along, is a heavy burden. At least, I knew what was going on with my body because I watched my mother and her mother fight the same battle. Others who suffer alone may take years to discover what is happening to them.
What my migraine with aura attacks are like
Every single one of my migraine attacks begins with the same opener, a visual disturbance. The word “aura” has several meanings, in my personal case, the word means losing parts of my vision. I am sure it is difficult to understand what I physically see and for me, it is the most overwhelming part of my entire migraine experience.
I see either black and white or rainbow-colored zigzag flashing lines in my vision. If it is not the flashing lines, it’s tunnel vision, seeing only directly in front of myself like looking through a cone or feeling like I constantly have a load of tears in my eyes. It is nauseating to say the least and that is the start to every migraine attack I experience. That moment that brings me from smiling and having a good time to a nervous panic. Losing parts of my vision is scary.
The visual disturbance is often accompanied by varying amounts of pain behind my eyes, numbness and tingling in my face and limbs, slurred speech, migraine babble (transient aphasia), nausea/vomiting, and constant yawning as my brain is desperately trying to receive more oxygen. The only constant in the list of my aura symptoms is the visual disturbance and it usually lasts for 20 to 30 minutes.
Upon starting to lose parts of my vision I have to drop whatever I am doing, to take my cocktail of medications and find a room to attempt to sleep in darkness and quiet. The trick for me is to try to fall asleep before the severe, one-sided head pain sets in. It’s incredibly difficult to deal with as I know the crippling, painful nature of what is coming next if I don’t take my medicines and sleep.
If I can’t get to sleep before the pain sets in, I can expect a long, tough battle with dizziness and vomiting, too. Icepacks can only help so much before I start imagining myself slicing my skull open to release the pressure that is caused by the pain. I often think, if only I could poke the tiniest hole in my head I would feel worlds better. As I have matured, I have mastered the “remain calm mindset” in the aura stage. Becoming upset and tensing my face with the pain will only make it worse. A young doctor at a sports physical quoted, “you are the kind of patient doctors are afraid of”, recognizing that my symptoms mimic a stroke and can be very alarming.
After seeing my first neurologist as a teen, I was prescribed the typical oral migraine rescue medication. Because my migraines were not frequent enough, I wasn’t offered a preventative medication and so I stuck with daily magnesium and vitamin B2 (riboflavin).
The most attacks I have had in a month is six and sometimes I am lucky enough to go a couple months consecutively here and there without a single one. What is frustrating about having a migraine disorder without a preventative medication, is that I just have to wait for one to happen to be able to do something about it. This leads me to slightly worry everyday if I will need to leave a workout, class, team event, social hangout which causes me to zone out if I sense one coming on or feel a little off. The term for this is anticipatory anxiety and it gets in the way of my joy.
Sensory overwhelm with migraine brain
Attacks occur when my senses become overwhelmed. This could mean too much of or a too loud noise, too bright a light (or a flashy light), too strong a smell, too tight a ponytail, too salty a meal or just the overload of a combination of events happening all at once. In my day-to-day life I avoid certain triggers, for instance, caffeine, which is a college student’s lifeline which I have replaced with a daily nap to be able to power through a late night of studying. Lighting can throw me off. I steer clear of strobe lights which remind me too much of a migraine aura. Things as simple as the smell of certain deodorants, perfumes, or candles can be a trigger. Sunglasses are essential on a clear day or long drive.
I have found that being in a bustling scene such as a city street, party, or concert absolutely drains me. Sensory breaks are necessary at these events and sometimes I sadly avoid the whole event.
Missing out due to migraine
A few attacks in the past landed me in the emergency room. As soon as I started to miss meaningful events with my family because of these attacks, including holidays, I really began to feel the weight of these intense moments. I felt helpless.
Near the end of my sophomore year in college I started to have attacks more frequently and planned to see another neurologist. I left that appointment in tears of frustration because I felt unheard and because preventative medication still wasn’t an option for me. I began acupuncture. For a while it appeared to help but the relief didn’t last.
Due to the severity of my migraines, one attack leaves me out of commission for at least 24 hours. I do not feel like myself for up to a week after having an attack as they expend a lot of energy. The day after I feel like I just ran a marathon and took a graduate school exam all in one day. I have brain fog and process information slowly.
As a student-athlete there is a bit of pressure to go out and have a good time. This sometimes means late night hours in scenes with lots of lights and loud music. Unfortunately for me, in these settings, I become easily drained and overwhelmed and find myself skipping the night out or taking several breaks throughout the night.
It takes all of my energy to be comfortable and have a good time, with crowds of people, where all of my senses are engaging at once. It is difficult to explain to my team or group of friends that I’ll have to stay in most nights. I desperately want these special moments with my team and other friends. I long for creating lasting memories.
On the bright side, I have become comfortable being alone and independent. This allows me to truly understand myself as a person so I can walk away from places that don’t suit me and my values. I love where I am now – studying what I am passionate about and being a leader on an inaugural ACC women’s lacrosse team.
Moving, starting graduate school and new doctor
Finally, when I moved to Pittsburgh to start graduate school, I saw a wonderful neurologist who gave me hope. She officially diagnosed me with migraine with aura disorder, so I now have the correct terminology. She explained that cases like mine were extremely severe and after ten months of seeing her I was prescribed an Imitrex injection pen. Oral medication wasn’t helpful for me and I found myself having more rebound attacks because the first attack was not completely treated. The injection is stronger and faster.
My greatest challenge I have overcome
The greatest challenge I have overcome while living with this disorder is the fear of missing out on something if a migraine attack happens. Anticipatory anxiety is a true form of anxiety. It is difficult worrying all the time about losing parts of my vision especially during an important event. Living with a neurological disease has robbed me of family and friend time.
On rare occasions, games and practices were stolen by this invisible disease. Missing one game in my collegiate career may not seem significant but it really is. I work almost every day of the year on my lacrosse skills for 14-20 games a season. That isn’t very many games, and therefore missing one game hurts both me and my team. The games following an attack become even more nerve-wracking. I think my most anxious times during lacrosse seasons, are away trips because of bus rides and sleeping in hotels. These trips are long and exhausting and have the potential to bring on a migraine attack.
Lessons learned from migraine
The greatest lessons I have learned from having this disease are listening to my body and having a fearless mindset. I do my best to take a nap or find a place to recharge alone when my body tells me it’s time. Being aware of when my body starts to ask for a rest is crucial. Lack of sleep is a trigger for me and some days I have to stay up late to complete schoolwork and then rise early for practice with my team.
Also, I have learned to manage my fear. Many things can contribute to my anxiety, however, I still make plans and follow through with my daily schedule. Otherwise, I would miss out on many experiences.
In addition to sleep, movement is my other best friend! I try to get as much uninterrupted sleep as possible at night and keep my amount of sleep as consistent as possible! Working out, as a I do every day because I am an athlete, has greatly reduced the number of attacks..
Perspective, gratitude and hope
During my darkest days and worst attacks, I always remember that other people suffer much greater life struggles. I am grateful that my body is strong enough to allow me to be a division one athlete.
I keep in mind that an attack won’t last forever. I have an understanding coaching staff and teammates at Pittsburgh who give me time away from practice if needed. They even took the time to listen to my story before the season began and asked questions.
A crucial piece of advice I will give to anyone who is reading this who doesn’t suffer from a neurological disease; always listen to and believe people when they say they have an illness, whether it is visible or not. The most hurtful situations have been those where people place blame on me for having an attack. As if it is something I can control. Not being believed and having my integrity challenged cuts deeply.
A positive experience I have had from being a migraine warrior is learned empathy. Too often people cannot, and do not attempt to, sympathize with and understand what other people are going through. Even though I may appear fine, there are some days I struggle. Having this disorder allows me to empathize with other people with invisible illnesses, whether it be a neurological disorder, mental health issue or chronic pain.
The main reason I was so thrilled about telling my story and writing this piece was to be part of spreading awareness. If everyone could follow Migraine Strong on Instagram (@MigraineStrong) or do their own research on neurological diseases and disorders we could make strides in allowing this community to feel better understood which is what we need. Following this page has reassured me I am not crazy for having migraine symptoms and that I am not alone when I think I am the only one who doesn’t feel like myself on days I don’t even have an attack.
The next time you see an athlete and note their performance, remember, they don’t just belong to this elite physical performance group, they have dimension and sometimes that means they suffer too.
Therese Pitman, 23, is a second-year graduate student-athlete at the University of Pittsburgh! She studies public policy, plays division one women’s lacrosse, and sits on the Student-Athlete Advisory Committee as the Community Service chair. She welcomes being reached on Instagram @therese_pitman and Twitter @PitmanTherese.