The path I’ve taken from being a chronic head and neck pain patient to patient advocate for Migraine and headache disorders has been nothing short of remarkable. I’ve learned more than I ever thought possible about Migraines and headaches during this unexpected journey, and met wonderful patients and doctors. At times, I’ve received more support than I’ve given from patients and advocates just like me.
Whether I’d care to admit, I tend to be a curious, some would say even, stubborn person. When I don’t understand something I feel compelled to search for a satisfactory answer. On December 9, 1996, I slipped and fell, cracking the back of my head on our concrete driveway, sustaining a traumatic brain injury. I’ve had chronic head and neck pain ever since. My curiosity and let’s say tenacity kept me going at times. You see my head and neck hurt every single day, all day long. Chronic pain is exhausting, frustrating, relationship ending and life changing. If anyone tells you different, they are lying to you.
The first two years after I fell are blurry; in fact so blurry I hardly remember them. I do remember being in vast amounts of pain, lying on the couch, or in bed, and being a spectator in my life. My children continued to grow and my now ex-husband slowly became bitter. Bitter because the woman he married was gone and it didn’t look like she was coming back anytime soon. Thank goodness for my dear friend Gisele who basically took care of me and my children while my ex-husband was working. She helped talk me off some pretty steep cliffs when I was feeling very low and depressed through that period in my life. During short moments of clarity, I began to wonder why I was in so much pain.
At this point, I’d seen quite a few doctors and received the same response – “you had a concussion and probably have post-concussion syndrome, here’s some medication – see you in three months.” I was tired of hearing the same story and decided it simply wasn’t good enough anymore. What was going on with my head and why? Why was I forgetting things? Of greater concern, why was I having new and different symptoms? You see, in addition to chronic head and neck pain, I was experiencing tingling down my arms, my joints and muscles were very painful, my eyes and mouth (not to mention other more private areas) were excessively dry, my ears were constantly ringing and my fingers, toes and nose would get so cold they turned white and hurt -even in June!
These answers were a bit different, – “these symptoms are side effects of the medications you take.” For years that seemed plausible because I was taking quite a few medications. But when I had medication changes, my “symptoms” never went away. That’s when I got irritated. I knew deep down there was more to my chronic pain than “medication side effects.” I was mad and I wanted answers.
When I felt up to it, I would search the internet for information on chronic pain and how to treat it. I learned about concussion and post-concussion syndrome, traumatic brain injury and whiplash. Each search I did yielded more information than the last. These searches lead me to online support forums, question and answer sites and websites with plenty of misinformation. There is excellent health care information on the internet, but also misinformation and scams. When people are desperate and in pain, they will do whatever it takes to be pain free. As I continued searching for answers, it became easier to tell which sites were which.
When I discovered online support groups, it was as if a new world opened for me. These groups can be wonderful and supportive or closed and dictatorial. The tone in them can be receptive or off putting. For the most part, I loved the supportive, caring, compassionate feel these groups had and learned a great deal about pain. As I continued to learn more about my chronic pain, I became actively involved with these groups. I enjoyed learning how to find accurate information from forum leaders and sharing it with other members. Knowing you aren’t alone in your suffering is comforting. By this time I’d had a two level cervical fusion, a diagnosis of post-traumatic headache/post-concussion syndrome and still had chronic pain.
I was desperate to know I wasn’t alone.
Becoming part of these groups was extremely validating – reaching out to forum members came naturally. It was inspiring to offer support and encouragement to others who had chronic head and neck pain. For some, coming to the realization that they aren’t alone can be very cathartic. In 2005, Teri Robert, a patient advocate and educator for Migraine disease and headache who would become my dear friend and mentor, saw this and asked me to become a moderator for an online Migraine support group she ran. From that point on, I’ve been absorbing as much information as I can about Migraine and headache disorders providing accurate and timely information. I’m passionate about being a patient advocate and educator.
It is an honor and privilege I’m thankful for even though it’s become a much unexpected path in my life.