People often look back on childhood memories with fondness – trips with family; playing with a puppy; long, hot summer days spent outdoors. For me, it is a slightly different story. One of my earliest childhood memories is of severe head pain. I’d tell my parents about explosive pain inside my head but I don’t think they really understood what I was going through. They tried to understand and to help, but couldn’t imagine why a child kept complaining of head pain.
More than 45 years later, I have been treated for migraine disease by many headache specialists and while the treatments may not have always been successful, they understood my pain. More importantly, I now understand my disease. For anyone reading this story, migraine disease is not an enigma. You understand this debilitating condition. The World Health Organization classifies migraine disease as one of the 10 most disabling medical illnesses. You understand that something as harmless as a spritz of perfume, a change in weather, or a glass of wine can potentially trigger an attack and send you running for a dark, silent room for days on end.
As I started analyzing my triggers, I kept an extensive migraine diary, hoping to find ways that I could help manage this complex neurological disease. Gradually I started to see a pattern of what I now know are the “risk factors” in my life – things that can trigger debilitating migraine attacks, especially when stacked together. Triggers are complex, vary from person to person – sometimes even attack to attack – and can have a greater impact when “stacked.” They include factors such as odors, light, noise, weather changes, humidity, medications, neck pain, eye strain, hormones, food, hydration, sleep patterns, and more! Slowly, I learned how to avoid some of these, but I am just not able to escape some of these factors such as perfume, drops in barometric pressure, or hormone fluctuations. I shared information with my doctors regularly, trying almost every old and new medication that was approved for migraine disease, and still, nothing really helped.
People with migraine disease often make tradeoffs with their medication. I dealt with some terrible side effects of the different treatments I tried – brain fog, nausea, dizziness, palpitations, asthma, stomach pain, allergic reactions – in addition to dealing with my migraine attacks. At one point, I spent most of my days trying to fight it off and it began impacting every part of my life. I wasn’t able to show up for my family and friends, I stopped making plans because I was convinced I wouldn’t be able to keep them and in a devastating blow, I felt like I was slipping away from work as well.
I realized a few years ago that there was no way I could keep a full-time job and deal with my migraine attacks and that was when I fought and won a three-year-long battle for disability due to my migraine disease. I had to jump through so many hurdles to explain to the authorities that migraine is, in fact, a disabling disease. And that’s when I realized what I needed to do – to be a voice for people with migraine disease and help others understand what it truly means to live with this disorder.
Over the last two years, this has become my life and I’ve finally found new purpose. I want to help others who are emotionally, physically, and financially impacted by this disease and use my voice to inspire others living through the pain. I’ve launched a website called Migraine Meanderings, a Facebook community support group for those interested in the new and emerging treatments, Hope for Migraine, and an advocacy-oriented migraine support group, Migraine Meanderings. I refuse to give up hope and am thankful every day for what I do.
While I have been trying to help uplift others, I also live with ongoing pain. Medications helped a bit, but managing the disease along with all my other comorbidities is difficult. It’s important to note that migraine affects everyone differently and therefore, treatments work differently for everyone. I want to share a message with all the readers – don’t give up hope. Tap into a support community, come join us online, keep asking questions, and never give up holding onto the future. It’s the only way forward for migraine warriors like us.