Written By Angela Dotson for Chronic Migraine Awareness Inc.
Why is community so important, whether in real life or online? Humans are herd animals. We need other people. We need family or friends (and pets) to lean on in hard times, or to help in hard times. We also need other people to celebrate the good times with. If we are going down into the pit of despair, having a friend who gets it, or at least is compassionate and there for you, is so helpful. Even if you just have an online space, a safe place, where you can talk about what’s going on in your life can also help. The support you can get, and just the act of writing out your thoughts, is integral in coping with any disease. Knowing someone else is going through the same thing, knowing someone at least understands, knowing someone is there to talk to, lessens the perceived isolation and aloneness mental and physical illnesses can bring. Knowing someone is working on new treatments gives us hope. Those of us dealing with Migraine can also deal with depression, anxiety, panic, PTSD, and other illnesses; support is vital. Since Migraine is such an individual and hard to treat condition, peer and expert support is necessary.
I have been dealing with Migraine for about 27 years. In the beginning, it was bad. Horrible pain, vomiting, light sensitivity and I don’t even remember what else. Migraines were thought to be vascular and doctors would only give me pain medication and tell me it was just stress. They did not understand the disease. It wasn’t until I met a doctor, who brought up preventative medication and introduced me to Elavil, that I started to get somewhere. That little pill helped in so many ways, it helped with my anxiety, I was able to tolerate my stress at work better, I had less migraine attacks.
After that initial success, I started researching migraine on my own. I read books and searched the internet. Doctors still did not understand it. I think 99% of what I have learned has come from my own research. I’ve seen one neurologist, who was a headache specialist, who only cared about me trying three medications, and if those did not work, Botox was his last option. He did not ask about anything else, he ignored my diaries and questions. I never went back. Since my migraines have gone chronic, and now daily, I am on a quest for a new neurologist. I think I am one of those people who are hard to treat. I changed my diet, tried different medications and have had very little luck. Topamax helped a little, but I almost lost my job due to side effects. I feel like I’m back to square one, except for avoiding my known triggers as much as possible. Although, I can’t do anything about the weather, darn it!
Migraine and Headache awareness is equally important in coping and creating public health programs. The more the general public knows and understands, the less fear and stigma will exist. The more we speak up, teach others and help others, the more everyone learns and can see how we exist, what our lives are like. They can see us as people deserving of compassion and assistance. They can see we still have much to offer. Those of us with Migraine, or any headache disorder, can band together and help each other. We as human beings can create more unity and hope and keep up the fight for better treatments, and treatment.
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