After deciding that medicine wasn’t working for me, I did some more research (I know, a little knowledge is a dangerous thing!) on alternative treatments for Fibromyalgia and migraine. I saw a chiropractor who did adjustments, laser therapy, cold therapy, supplement shakes, and finally acupuncture. After 2 months, and huge medical bills, I discontinued treatment because I wasn’t feeling any better. Just lighter in the wallet. I’m not saying these treatments don’t work, they just didn’t for me. I tried another chiropractor a year or so later just to be sure. Still no relief. I went on to biofeedback, which does relax me when I’m stressed, but doesn’t lower my pain levels. I tried yoga, which I love, and will continue if able, but no headache relief. Meditation eased my mind, soul, but not body. Onto the vitamins and supplements. Oh, the money I spent and wasted! Butterburr, feverfew, magnesium, B6, B3, St. Johns wort, garlic, etc. Side effects galore, but no migraine relief. Next was diet changes. I gave up my beloved coffee, then tea, caffeine, sugar, chocolate, preservatives, gluten, additives, GMO, artificial colors and sweeteners (all separately) and no help. So much for going back to nature! I was desperate, severely depressed, frustrated, nearly broke, and out of options.
Around 2008, the frequency and severity of these headaches caused me to start missing quite a bit more work and ramped up my stress to inconceivable levels . My GP had prescribed Fiorinol, which helped initially, but caused rebound headaches until I had pretty much daily pain. I continued on this journey to Hell for almost 2 more years. Self-medicating, crying, suffering, not sleeping, losing friends, becoming a hermit outside of work. In 2010, as my headaches worsened yet again, and I still couldn’t find a cause, cure, or treatment, I was finally referred to a headache specialist. After a very thorough initial exam, Dr. P. was sure that I was experiencing migraines. So began the prescribing of the first of 10’s of different medications and combinations of medications. After discontinuing all of these meds, due to either serious side effects or not working, Botox was suggested. I drove alone to this appointment, a roughly 30 minute trip on the interstate, expecting a shot. Due to lack of information on someone’s part, (the doctor), I didn’t realize this procedure involved 31 injections into my head and neck. It was painful and caused a panic attack. I then had to make the return drive home, in tears and panicking the entire way. The Botox didn’t help at all and the entire experience left a bad taste in my mouth. I called the doctor to find out the next step and was informed that he had done all he could and was referring me to pain management. I was done with doctors and the entire medical profession for awhile.
I became a bit anti-doctor after my latest foray into the world of medicine. Especially the next to impossible task of diagnosing and treating something that wasn’t overtly visible to the naked eye. If I had a broken bone or a tumor, I would have been diagnosed and treated without issue. To explain to a complete stranger, in a limited amount of time, sometimes breaking into tears from frustration and chronic pain was difficult to say the least. I decided to embark on my own journey to diagnose myself. I listed my symptoms on various websites which all came back with different suggestions and recommendations. So many diseases, syndromes, conditions: Lupus, Churg-Strauss, brain tumor, meningitis, aneurysm, etc. Needless to say, I threw myself right into a panic attack. After calming down, I realized self-diagnosis may not be the best way to go. No more Googling for awhile.
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.