I arrived at my GP’s office for my appointment armed to the teeth with articles and statistics regarding migraines and my related symptoms. He was in a rush, as usual. As I sat down in his office, he asked how I had been. I told him I’m having recurring headaches. He said stress or sinus were the most likely causes. I told him both had been ruled out. He asked me who had ruled them out. I responded that I had seen my ENT who gave me an exam and meds that didn’t help. She diagnosed migraines. Well, my GP said, I still feel it may be stress related and maybe I should see a psychiatrist. I explained that I was there for headaches and not psych referrals. He agreed to continue with the Fiorinal and refer me to a neurologist. I agreed to the referral and we set up an appointment. After an extremely thorough exam, bloodwork, an MRI and CT scan, the Neurologist diagnosed probable Fibromyalgia, with headaches being a symptom. Medication was given to try for two months. I filled the prescription for Lyrica, went home, and read the possible side effects. The least frightening side-effect being “permanent nerve pain.” I said to myself “Not a chance!” I didn’t think my symptoms were from Fibromyalgia, and since there is no definitive test, I wanted to keep searching. Next, I was referred to a rheumatologist. More tests, best guess, Fibromyalgia. I went home and did multitudes of research on Fibromyalgia and other “invisible illnesses.” The current medical opinion was that these “syndromes” were attached to mostly women, were stress-related, and usually patients had underlying psychiatric issues. In other words, there was a stigma attached to these illnesses. I wasn’t convinced that I belonged in this group. Onward on my journey.
I had the occasional headache over the years. It wasn’t until I was in my 20’s, after sinus surgery, that I developed a headache that wouldn’t subside. I wound up at Thomas Jefferson University Headache Center in Philadelphia. They diagnosed a Migraine. I stayed for several days for treatment and was released. The next incident wasn’t until my 30’s.I had what I described as the “worst headache ever!” I went to the emergency room and was told it too was a migraine. I was treated and released. I didn’t have anymore issues until 2005. I was in a stressful job and having chronic sinus infections so Migraine didn’t even enter my mind. As my headaches became more frequent and painful, I saw my ENT, who diagnosed sinus headache. Treatment didn’t help. I saw my GP, who diagnosed stress. Treatment didn’t help. Frustrated, and in pain, I decided to do my own research. I Googled and WEBMD’d and went back to my GP. Thus began my epic struggle for answers and treatment.
The best place to begin is always the beginning. As a child and preteen, I had pretty severe issues with depression and panic attacks. When Prozac came out, it was my miracle drug. It kept me chemically balanced and able to function without issues. I grew up normally. Graduated high school, began my working life. I tried many different types of jobs, then, in my early 20’s, I had an interview at a dental office for a receptionist position. I got the job and spent the following 23 years moving up in the field from front desk to chairside assistant to manager. My most recent job was Practice Manager of a large, prestigious dental practice. I loved my job, the responsibilities, the money and benefits and especially the feeling of security. In having a place to work steadily until retirement. Then in 2011, after 6 years in this position, everything changed. My life that I had always known had ended. And my nightmare began.