The headache specialist had already tried me on most of the on and off-label preventives. I couldn’t take the side effects of the triptans. We had completed Botox treatment. He changed my antidepressant to a different type, and that didn’t help. He was frustrated, and so was I. So when I first started with my pain management doctor, I didn’t know what options were left for me. Dr. H. promised me that he would do whatever he could to get me out of pain or at least make the pain bearable. He asked me what my goal was for treatment, and I said I wanted to be able to return to work eventually. I couldn’t afford not to and was way too young to retire. He said let’s start slowly. The first drug prescribed was Oxycontin. I had never taken anything that strong and was concerned. Dr. said my description of my pain warranted it. He prescribed Dilaudid for breakthrough pain. I left with my two prescriptions and took my dose that afternoon. The Oxycontin caused the migraine to get worse, so I took the Dilaudid as directed. I wound up in the emergency room that night. I had shortness of breath and rapid heart rate. I was treated with IV saline for dehydration and given a “migraine cocktail” for the continuing pain. I was released in the morning. So much for my first foray into the world of heavy duty medication.
My first visit at Pain Management was entered into with nothing but dread. I walked in and saw many types of people. Varied races, ages, attitudes, fashion sense, etc. The one common thread was their faces. I knew that face. I saw that face every time I looked in the mirror for the past few years. PAIN! Different levels and degrees, but pain nonetheless. Crutches, walkers, wheelchairs, neck, back, and knee braces were prevalent. I got several looks thrown my way which I interpreted as “What’s wrong with you?!” “You don’t look sick!” I filled out tons of paperwork, including “drug use and dismissal” forms, then I got my lecture about office procedure. I could be urine drug tested at any time without notice. If I forgot to bring all of my meds to each visit I would not be seen and may be dismissed from the practice. If I lost, sold, or gave away my meds, I would not be given another prescription until my next scheduled appointment. I would be given a “detox cocktail” from the pharmacy to hold me over. I felt like a criminal and a drug addict already and I hadn’t even met the doctor yet. I was finally (an hour and a half after my appointment time) taken into an exam room. A medical assistant asked me if I was currently on any illegal drugs. I said no, I didn’t do drugs. She made some notes then took my blood pressure, weight, and temperature. She told me doctor would be right in. 30 minutes passed. My head was throbbing and I was near tears. Finally, the doctor came in and introduced himself, shaking my hand. He immediately looked me in the eye and went to lower the lights in the exam room. He asked me how long I had been experiencing migraines. Not headaches, but migraines! I told him it was going on two years almost daily. He shook his head and said how sorry he was and that he would do all he could to get me feeling better. I liked him already. Empathy! A rare word in the invisible illness world, and he had it! He believed the pain was as bad as I described! I could have cried from relief! (I may have!) I began to change my outlook and actually think positively!
I had been living on my unemployment benefits from the dental practice, which just about covered my expenses. Of course I lost those when I took the job with the local dentist. I lost my appeal for benefits from her, so now I was well and truly screwed. I had no job, no income, chronic daily migraines, and no treatment that worked. I basically broke down and settled into a deep depression for a time. I eventually came around and became proactive. I was basically homebound at this point, except for doctor appointments and trips to grocery and pharmacy. I had spent all of my savings on medical insurance payments, co-pays, prescriptions, utilities, rent, car insurance, and everyday necessities. I moved in with my mother, sold my car, since she had one, and filed for Disability Insurance Benefits. I filed without assistance and, after 6 months, was denied. I hired an attorney and re-filed. We lost. I am currently waiting for an appeal hearing date to go before a judge. In Virginia, there is a 12-18 month wait time for this hearing. We filed in September of 2014 and are still waiting. I was advised by many websites and chat rooms to write a “Dire Need” letter explaining my financial situation and the urgency of my request. I also got my pain management doctor to write a letter stating that my symptoms were so bad, he didn’t know if I would ever be able to work again. Which, at this point, as hard as it is to admit to myself, I have to agree. These documents were filed to SSI on November 8, 2014. Still no response. I applied for Medicaid, thinking that I could get that until SSI was approved. Ridiculously enough, I am not eligible for benefits until SSI is approved. So, what am I supposed to live on?! How am I supposed to pay bills?! What the hell happened to my life?!
My first concern after losing my job was, of course, what now?! I couldn’t get unemployment forever and couldn’t sit at home. So while searching, I decided to go back to school at night. After exhaustive research, per usual, I found a local college and decided to focus on nursing. I began working toward Certified Medical Assistant, as my closest school location didn’t offer Practical Nursing at night. I could switch over and carry my current credits toward a degree. I enjoyed school, but my migraines continued and actually got even stronger and more frequent. Since I couldn’t find work, I decided to switch to day school. I seemed to feel better during the daytime. Eventually, the migraines won out and I had to finish my double major online. Luckily, I had already completed my labs so I didn’t need to go in to the school anymore. I graduated with highest honors, 2 Associates degrees, and certification in Medical Assisting. I felt so proud of myself for completing something and being in control of at least one part of my life. A few weeks after graduation, December 2010, I applied for a job at a dental office about five minutes from home. I prayed that with the hours, the location, and the lack of stress due to basically just being a receptionist, that I could handle it. Once again, the migraines won out. But not before I found out that my new boss was a born again Christian who prosthelitized her religion on me and was upset when I refused to “be saved” and told her that I was Jewish. She found a ridiculous reason to fire me and I lost my fight for unemployment due to Virginia being an “at will” state. I tried to prove religious discrimination, but it was her word against mine. I wish her nothing but a continuous influx of potential employees who all have opposing religious views than hers. Onward!
I felt like I was giving up. I had always imagined pain management as the introduction to a life of drugs, addiction, disability, and loss of self. I was well aware that I was suffering from depression (whether chemical or situational) and anxiety and panic attacks. The main cause being, surprisingly not the constant pain, but the fear of not having my job. I needed structure in my life desperately, and without it, I was struggling you stay calm and not panic. At this time, I was taking only Fiorinal, which I knew caused rebound headaches, but it was all my GP would give me. I knew I needed answers and treatment, but was still afraid of powerful medications. I had externed at college for a Pain Management Practice about 10 months prior. Ironic much?! 🙂 I saw the patients hobbling in, bent and twisted, in wheelchairs and on walkers, huddled in chairs in pain. Crying, frustrated, depressed, not caring about appearance or much of anything except cost of visit and will it hurt. Could I really be this bad myself?! Looking inward is always hard. I did see myself in their faces and medical histories. How had this happened to me?! I was fine just 2 years ago. How could anyone spiral downward so fast and so hard?! I knew I had to make myself go at least for a consult. I was terrified what I’d find out!
By early 2010, the migraines were out of control! I was getting them around two or three times a week. Along with the head-splitting pain, I had mood swings, crying jags, vomiting, diarrhea, vertigo, vision loss, hallucinations, hearing things, cognition problems, trouble finding the right word or not being able to speak at all, painful joints and skin. I thought I was losing my mind. I eventually found out that these were all symptoms of migraines and also fibromyalgia. I met with my bosses and explained my situation. They were not happy, but I also found out that they were in the process of selling the practice and the new owners were replacing much of the staff with their own employees. Karma?! Kismet?! I had mixed feelings as I had hoped and planned on retiring from this well-paying position when the time came. But not now. Now I would have no medical insurance when I really needed it. I wasn’t sure how much longer I could have worked without proper treatment, but the choice was taken from me. I filed for unemployment and lost. I had to take it to court with a lawyer to win. At a huge cost to me, of course. I finally had no more excuses to put off scheduling an appointment with the pain management doctor that the Migraine specialist had recommended.
By late 2009, my Migraines began affecting my work. I was living on OTC pain killers and caffeine. I was missing meetings, full days, leaving early, going in late, and not looking healhy. My bosses were concerned and so was I. Dealing with angry patients, frustrated employees, frazzled bosses, and my own pain and anxiety issues, I was close to losing it! Stress and migraines go together like oil and fire! After hanging in there as long as I could, and before losing my job, I decided I had better go back to my GP for some hopefully better advice.
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.