I am a single mother of a wonderful 11 year-old girl named Claudia.
My story begins October 2003. I started having sinus-like pain on the left hand side of my face as well as a stinging feeling along the bridge of my nose. I was recovering from bronchitis and just coming off auto-immune meds and antibiotics. I had gone to the urgent care clinic at my local hospital where the doctor had previously diagnosed me bronchitis. He then diagnosed me with sinusitis and gave me more antibiotics.
I went back several times over a span of six months. The doctor black balled me as a drug seeker though he never gave me painkillers. He even stopped giving me antibiotics and directed me to use an OTC. He never referred me to a specialist as he felt that he had done his job. Needless to say, that was the last time I saw him.
The next doctor I saw, my PCP, felt it may be a migraine. At that time “migraine” meant anything that they couldn’t find a reason for. I was sent to neurology and put on an anti-depressant. It didn’t work so therefore it wasn’t a migraine. Back to square one. That’s when it started. Pain with no real relief means depression. By that time I had fought with every doctor I saw and my partner at home started losing faith in me as well as me losing faith in myself.
After two years I was finally referred to the right neurologist who diagnosed me with a psychological problem, but treated me with neurological medication that did work. I was pain free for a year before I broke through the medication. After I became tolerant, I went back to my PCP because my neurologist wouldn’t return my phone calls. My PCP referred me back to the neurologist and to the pain clinic.
I had my first appointment with the pain clinic doctor. Being that my diagnosis was psychological, he was reluctant to treat me, but did give me anti-seizure med. I later found out that he gave me the maximum dose without stepping up. I warned him that I was sensitive to medication, but he didn’t listen.
The first day I took it I couldn’t stand up. I walked into walls for a month and fell asleep on the job. The worst of it was it didn’t help me. Six months later, I went to the pain clinic doc and told him that I hated the medication. I wanted off as I thought I was now dependant on it. He was offended. He couldn’t believe I was saying this about his baby, his miracle drug. He yelled at me and told me it was impossible that I was dependant. He then threw an anti-depressant at me. It took me three months to come off the anti-seizure. Meanwhile I had gone to the neurologist for help and he told me to just deal with it.
That crushed all my hope. I felt I couldn’t trust any doctor. I had received a flyer in the mail for the trigeminal neuralgia center in Springfield, MA. I spoke with them and received a proper diagnosis. I got a Glycerol Rhysotomy that should last three years. After four months, I experienced pain again and I waited two months to go to back to my PCP. The first thing he said to me was “You must be depressed.” Needless to say, I got myself a new PCP.
I am newly diagnosed with Hemicraina Continua and I get obliterations at the C-spine. Although it took me five years to find help, I never stopped. I lost a relationship, but I have been through hell and back and my relationship with my daughter is stronger than ever. In my field, I can pass my knowledge of pain and compassion to my patients, and that is something I really enjoy. I love that now I can make a difference.