Headache Diary: A Summation of 90 Days of Pain

On the 7th of September I had what I can only assume was the first migraine of my life. It had all the textbook symptoms (bright lights, loud sounds, intense smells, killer headache) with the exception that it did not go away with the shelter of time in a quiet, dark room. Well, let's say it evolved. I, since that day, have had a non-stop 24 hour a day headache. It is stationary on the right side of my head. It typically has the most pressure in my right temple region. For a couple of weeks in September I thought it was going to turn into the flu or a sinus infection...so I took Advil and Aspirin to their maximum daily doses with no results. Upon visiting my doctor, she told me to take double the amount of Aleve that the bottle suggests (basically prescription amounts). I did that for another week or so and had no results. After about a month of not missing school...teaching day in and out with a throbbing skull, sensitivity to light, and sensitivity to sound...I broke down one night after school and went to the ER. There they administered an IV migraine cocktail that they assured would rid me of my headache for good. It did nothing. They prescribed a synthetic narcotic, which I took one day and missed a day in my classroom. I took it only one day because it made me loopy and unable to drive with the exact same headache. I went to see a neurologist, had two CT Scans, had an MRI, had an EEG, tried a whole host of migraine and anti-seizure meds (used to alternatively treat migraines), but the tests were normal and the treatments did nothing other than cause me to experience light-headed shakes whilst still having a seemingly never-ending headache. I kept teaching day in and out, all the while researching possible causes on my own with the help of Kristina. As the neurologist kept making appointments and trying more and more expensive migraine treatments which obviously were doing nothing, Kristina found an article about a medicine called Indocin which treats a rare, one-sided headache condition called Hemicrania Continua. As nothing else was working, and I met all the criteria of diagnosis for that type of headache with the exception of 90 days of constant headache at the time (I have at present surpassed 90 days)...the neurologist put me on that medicine at approximately 60 days of non-stop headache. I felt some relief within a couple of hours of taking the first dose of Indocin (which is also a tell-tale sign of Hemicrania Continua though I still have no diagnosis). As it brought me some relief I thought I could manage and kept on keeping on. Teaching and doing all the extra things for pay and for free that an overachiever does for their career/employer/ambition/et cetera. I would like to say that I am made of steel and everything is wonderful. You know, soldiering on...but as 60 days turned into 90 days...and the nonstop war went on inside my body against my invisible enemy (dramatic, I know) I began to break down. I kept pushing myself with school, contract work with the state, and additional graduate work to get my certification to become a school principal. By Friday of each week I was sort of Hell-on-wheels, often getting physically ill but staying at school as I was too stubborn to go home, stressed, and thus developed additional symptoms other than just a never-ending headache. As if "just a never-ending headache" is something to scoff at. The right side of my scalp and face started loosing sensation or burning or feeling little electrical shocks in addition to never getting rid of the head pain. I went to the dentist and had him check my TMJ to see if my stress had been causing me to pinch a nerve or something...like all other tests my TMJ is fine. He says it is fine, even beautiful. He suggests it is my Trigeminal Nerve cluster...also on the right side of my head. Strangely,Trigeminal Neuralgia is treated with Indocin, the same medicine that has brought me only mild relief for the past month and some odd days. It also has no complete cure and no sure-fire test to diagnose it that I can find. This past weekend was the kicker. On Saturday, we had cousin Christmas photos at Olan Mills at the Mall. I thought, "I can handle this!" as I am often prone to do. It was 3 weeks before Christmas and I am light and sound sensitive constantly now! I am an idiot. It was awful, but I soldiered through. After all, I had to...we had two Christmas concerts this weekend as well and I wanted to be there for my 6 yr old. One concert in Buckhannon on Saturday night and one in Bridgeport on Sunday afternoon for Cate's children's choir. The photos came out beautifully. The concerts were wonderful too. The children's voices, the violins, the cellos, the piano...all amazing, and I am so proud of Cate and her group. Then, there was a song with a wood block and chimes, and a song with a bell choir. The longer the bells went on the more the side of my head vibrated and throbbed. Saturday's venue was large, lit, and I made it through, but Sunday's venue was in a small theatre with darkness and LED lighting on stage. I am light sensitive and the bell choir and wood block songs were there again. It was all I could do to stay in my seat. I missed work Monday. I called off sick for the first time without doctor's orders due to my headache. I went to my general doctor's office for a "we'll fit you in" appointment. She was not pleased. She was not pleased that I had not found relief. She was not pleased that I was pushing myself so hard. She was not pleased that I was still seeing the same specialist even though he was only giving me 5 to 10 minutes of his time each appointment and dismissing my input that this might not be a migraine. She said I should take work leave through Christmas, and since I never take sick days and had over a month's paid leave saved up...I took it. She put me on another med called Topamax which sometimes treats the type of headache we believe I am having, and referred me to a new specialist at a headache clinic in Morgantown. The doctor told me that neurologists, in her opinion, do not generally like to deal with headache patients unless they specialize in headaches. The one she is sending me to is supposedly a headache specialist. So, I am home for the holidays. I have left all of my students and my classroom to the will of a longterm sub, but I am trying not to focus on that. I have to try to get better. If this is Hemicrania Continua it will never kill me, but there is no cure. At this point, I need to reassess what my definition of success is. Today, feeling the way I have for the past 90+ days, I am not sure I can be the kind of teacher I need to be to justify staying in the field. I am trying not to make those decisions yet though. I feel that even my very elaborate and windy description of the past 90+ days does not do justice to the war that I am fighting inside and that Kristina is supporting me through. For someone whose entire career is based on the power of their wit and mind...having something like this constantly paining and distracting me is barely explainable. I feel like I am going to get looks that are really thoughts of, "You don't look sick!" or "Just suck it up and move on." It just gets harder and harder to do as the days and weeks progress in constant discomfort and pain without any answers. I am not asking for sympathy, or suggestions for a cure...trust me I have heard a million things already. Just please keep us in your thoughts.