Meet a Migraine Superhero: A Punk Rocker with Persistent Migraine Aura
Meet Elaine. You probably won’t know she has migraine. She is an upbeat, energetic recent art school grad who plays in a punk rock band. The band’s music is energetic, powerful, and fun. She enjoys the loud volume of the music as she finds the distortion on the guitar and the vibrations soothing. However, a few years ago, before her career as a guitarist, her whole life changed abruptly.
Elaine’s migraine superhero origin story:
She was 19 and still an art student. She had an allergic reaction to a plastic she was using in school for which she was given Benedryl. She remembers not feeling like herself. Her vision didn’t seem quite right. It was hard to process fast moving objects. Things looked too far or close and she couldn't tell if they were moving left or right. It made fixing her gaze on a busy scene nearly impossible. Her vision was warped like she was wearing glasses that were too strong for her. She describes it like looking into a “Magic Eye” book where things can appear flat and depth perception doesn’t always make sense. She thought it was anxiety or stress, though she wasn’t feeling particularly anxious at the time. ER doctors also thought it could be psychological, her mother thought maybe it was vertigo, but no one could give her an answer. The symptoms were not subsiding, but persisted day after day. Many days she had to move slowly when walking so she wouldn’t get disoriented, and sometimes she couldn’t bike to work and would have to call in sick.
In addition she had attacks that felt like a build up of these symptoms. She describes the attacks using an analogy fit for a musician: a build up of her aura as if someone turned up the dial on the radio to the loudest setting and the noise starts to break up with static and distortion. She felt exhausted and would try to sleep but her dreams would be restless nightmares or strange out of body experiences. The room would spin, her limbs would be heavy, and her vision would turn to TV static. Sometimes she would have unrelenting head pain, but the pain wasn’t frequent enough to help her get a diagnosis of migraine.
Elaine’s search for a diagnosis:
First she got her vision checked, and the eye doctor mentioned offhand that her symptoms reminded her of migraine aura, but it didn't register because she didn't know it was a real "thing". In the course of about six months she saw two primary care doctors, a neurologist, another specialist, and a neuro-ophthalmologist. She was tested for epilepsy before migraines were ever suggested again, but finally after more tests, she was diagnosed with migraine without headache, and was sent to another neurologist.
Her treatment and life with migraine:
She felt like she was "nagging and being annoying." Her doctors didn't give her any answers, but only medication. She tried many of the common preventive medications for migraine, including propranalol, topiramate, and an antidepressant, but the meds were making her worse, not better. She tried to ignore the symptoms thinking if she focused on them too much she would notice them more, but that didn’t help. So she sought alternative therapies and had some success from acupuncture, Chinese medicine, and lifestyle changes like getting a regular sleep schedule. Her daily symptoms never went away completely but she was high functioning and started living a normal life again. However, she had a setback when she stopped her Chinese medicine during a hectic schedule. She decided to find a doctor who could help her further.
Finally, an accurate diagnosis and further positive treatment:
After seeing a well-known headache specialist, she got the diagnosis of Persistent Migraine Aura. It was comforting to know that her symptoms fit a pattern and she finally had a decent explanation. Her specialist prescribed a supplement called Migra-eeze and encouraged her to continue with the lifestyle changes and alternative treatments she found helpful. Since then Elaine has consistently been able to keep her symptoms under control. She hopes one day the aura will go away completely, but for now she is happy she can live her life normally.
What are the road blocks she sees as a migraine sufferer?
It felt at times that others in her life didn’t understand her condition, especially with her unique set of symptoms. When she called in sick for work or class, she thought that teachers and coworkers likely assumed she was having a more classic type of migraine. Her boyfriend at the time would say she was complaining when she felt she was advocating for herself. A roommate would leave a door open with a light shining in her eyes during a bad attack. However, she says in general the people in her life have been supportive. One of her good friends, though never having migraine herself, has always been very empathetic towards Elaine. Her band mates were very supportive when she needed to take some time off during a bad episode.
Another challenge she has faced is dealing with her migraine attacks while performing. One very memorable day on tour, she remembers sitting in the van giving herself a pep talk while slowly eating applesauce. She did get up on stage, though she stood in the corner, and she was unable to socialize before or after their set. She dislikes how migraines can go against her very social, outgoing personality, but will carry on when needed.
What positive change can Elaine see from her migraines?
Elaine admits that before migraines she was more likely to push herself too much. Migraines have forced her to balance out any unhealthy tendencies. Perhaps in the long run, this will be beneficial to her health.
Perhaps most importantly, Elaine may not be playing in the band had it not been for migraines. Since it took her such a long time to get a proper diagnosis, she didn’t know what was wrong. She decided to follow her dream in case her health was declining. Migraines gave her the motivation and confidence she needed.
Note: This is the first in a series of posts about stories of migraine superheroes. Why the title of "superhero?" Because I think everyone who lives life to the fullest despite migraine is a superhero! If there is a type of story you are interested in hearing, or if you have a story that you think is unique or interesting, let us know!
Have you shared your migraine story with us yet?