Tuesday, December 27, 2011

Headache Diary 3 Months, 2 Weeks, 6 Days: Curiouser and More Curiouser

Went to the optometrist today. He did a bunch of tests that I had not had done for a couple of years since my insurance does not pay for them, but I figured in light of all that is going on I should have them take a good look. Paid out of pocket for them for sake of peace of mind.

They tested the pressures in my eyes and both were fine. They did High Definition scans of both my eyes to look at the optic nerve and the macula for degeneration. My left eye (non-headache side) was uninteresting. Now, for the right side: My right eye had improved from a -4.5 contact prescription to a -3.75 in less than a year. On the HD scan, we compared my 2011 right eye to the one from 2008. My macula (which typically degenerates as you get older as I believe) was clearer than in 2008, and though he said he felt funny even saying it...he said my optic nerve, and eye in general, looked younger now than in the 2008 scan. He had no explanation for that. I ended up with a -4.25 prescription for my left eye, and a -4.0 in my right so that they would even each other out. That is what the optometrist suggested. He had no suggestions regarding fluorescent lighting sensitivity and it making me physically ill. Additionally, very limited time spent under fluorescent light quickly exacerbates my headache and triggers the issues with the nerves on the right side of my face.

When all was said and done, he said my eyes are strangely healthy, and appear bright and clear. A freckle that has always been on my right eye in the back is now gone. He said he would have liked to have had an "Aha!" moment when he looked at my eye, but he said it looks the opposite of someone suffering from constant pain with exception of a little pinkness in the inner corner of the right eye on the white that he said looked like a tired eye. Said he saw nothing that would be causing the headaches or nerve pain and wished me luck.

I am left with more questions than answers. Guess I wait on the visit with the headache specialist in the end of January. I am still trying to get that appointment advanced. I have been calling every day to see if there have been any cancellations. The receptionists do not seem to mind. They have, in fact, encouraged me to keep calling. I am to return to my classroom next Tuesday, I had hoped to go back with relief, or at least techniques, I have neither. I am just going to have to steel my spine and push as hard as I can...all the while hoping for snow...copious...blizzard-esque amounts of snow.

Tuesday, December 20, 2011

Headache Diary 3 months, 1 week, 6 days: Up Next...the 7 Day Forecast

Since this is seemingly almost more annoying/painful than the never-ending headache (with exception to the couple of mega-surges I've experienced over the past few days) I marked up a picture of me showing the specific points where this nerve thing is really messing with my face on the same side as my headache. I hope this does not seem too neurotic. Even shaving has become a challenging experience. Something about the barely there feeling of the razor sliding over my face. Still makes me shiver just thinking about shaving yesterday. It wasn't fun.

Monday, December 19, 2011

[Infographic] How Social Media is Changing Our Brains

This has nothing to do with my Headache Diary...I just found it interesting. Click HERE for the infographic

Sunday, December 18, 2011

Headache Diary, 3 Months, 1 Week, 4 Days: Lights, Camera, Ear Plugs

I keep trying to be a normal human...at least one day a week. Understandably, that is limited when I must be wearing the darkest sunglasses I own if there is a speck of daylight or I am around florescent lighting. Saturdays have been the days that I try to venture out. As it is the holiday season, my six year old daughter had 6 year old activities that I wanted to attend today.

We started the day by going out to breakfast at a sit down restaurant. The food was great, as was the service, but the lighting was intense for a 100+ day headache sufferer with non-stop photo-sensitivity. The restaurant has many windows, they have a hanging light over each booth, but also had every can light burning on the ceiling. Not only did it bother my internal eco-warrior, it incensed my headache. It was a lovely breakfast though,and my six year old will not remember the intense lighting when she remembers the day.

Next, we went to the local VA hospital nursing home, where my daughter's dance troop performed a couple of shows for the veterans that were patients there. They really enjoyed having the kids perform for them. There was a lot of laughter, clapping, and smiles. The facility was also flooded with florescent lighting and I was unapologetic for being the only person with the group that kept their sunglasses on the entire time. There were a variety of florescent lighting sources, and the longer I was there I could literally feel a pressure pushing on the right side of my head that was more intense than the headache that has been with me 24 hours a day for the past 100+ days. There were moments of intense dizziness, lightheadedness, mild nausea, but I tried to not let on. I did not want to ruin my daughter's morning. This was her day. When we finally left the facility and entered the exterior lobby, I could tell two things. First of all, I was no longer in the presence of florescent lighting. Additionally, much like a day earlier in the week where I had experienced blinding pain, a weather system had moved through while we were in the nursing home and it had begun to snow.

I am not sure if it was the riddance of the intense lighting or the change in the weather, but I felt a great relief after leaving the place where my daughter and her friends had spent their morning performing. With a renewed sense of feeling more normal again, and the knowledge that a movie we had been wanting to see with our daughter and a friend would soon be ending, my wife issued the text and our friend met us for a matinee showing of the new Muppets movie at a local theatre. The sound in the theatre was deafening and painful during the previews, but I had come prepared. I'd purchased ear plugs that were designed to protect ones ears whilst shooting a firearm or operating large equipment. They were rated to 33 decibels. After getting them properly installed I could still hear the movie fine, but the entire theatre was otherwise silent. I knew they were working as I could see the audience laughing, but could not hear them. I could not even hear my wife speaking a time or two when she commentated on the film to me from the next seat over. Yet, I could still hear the film. Makes me wonder if it was loud due to my sensitivity to sound with this headache or if we constantly submit to damaging levels of volume when we take our families to the cinema?

It was a great film. Classic Muppet hilarity. First theatre film I had been to since this whole thing began last September, but I was glad it and our day out was over. As we drove home I could feel the headache intensifying above the 6 or 7 where it had fallen to when we left the nursing home earlier in the day. I knew it was just a matter of time until I could not keep up my game face to my daughter anymore and I would no longer be able to wear my "Super Awesome not in too much pain Dad" facade that I had been trying to keep up for most of the morning and afternoon. It hit me nearly as soon as we pulled into the garage. That was indeed the culminating event of my awesomeness...parking the car. I went inside, got out of my street clothes and into shorts and a tee, ate a snack, took my medicine, and headed for my sanctuary.

I do not remember much about the hours of approximately 4PM to 10PM in the evening. I know I was in my office, on my leather sofa, in the dark, and wrapped in a blanket. I have brief memories of the clothes dryer buzzing at some point, hearing my wife's fingers tapping away on her keyboard at her desk in her effort to earn a living, the pattering feet of my darling six-year-old on my wood floors as she opened my office door to give me a goodnight kiss on the cheek, but all else is a blur. I am not sure if I was asleep, as is my natural reaction to headache pain, or if I had passed out from the intense pain that I was experiencing which the Indocin and Topamax that are supposed to control my Hemicrania Continua-esque headache seem to be failing to do.

If you have read this, welcome to another glimpse of my life. It is not without joy, it is not without happiness. I have a wonderful wife and daughter, good friends, and can occasionally do normal things like going out to breakfast, proudly watch my talented daughter perform, and go to a film with friends and family. That stated, it is never just me that is attending these things. With me, always, is this infernal drumbeat, the headache that will not give me leave. With me in all my pride, fun, and joy...is pain. It gets harder to seem normal when I have to wear ultra-dark sunglasses at 10 o'clock at night in a restaurant, or in a building with few natural sources of light on an otherwise completely cloudy day. When I have to take leave from my classroom because the sound of 25 teens engaging in collaborative learning is so normal, yet builds to such intensity that is makes me lightheaded, or when a car backfiring somewhere in the neighborhood causes my ears to ring as if I had been standing beside a percussion grenade. It never seems to get easier. The longer this goes on it just seems to spiral downward. Rest and relaxation have done little if anything to help. Though I have made an appointment with a headache specialist at a nearby University hospital, I have to wait another month to see him unless I can catch an opportunity to get seen on a day that someone else cancels. Throughout all of this one thought keeps pulsing through my mind, "I am a really decent person, try my best to do everything right, made all the responsible choices, when am I going to catch a break with this?"

Wednesday, December 7, 2011

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.

Sunday, December 4, 2011

Headache Diary, 2 months, 3 weeks, and 6 days: Joy and Pain

Was so glad to see his darling daughter perform in the Christmas concert for the children's choir she belongs to. They all did so wonderfully. This is joyful and saddening at the same time. The voices, violins, and cello were so beautiful, but the stage lights and the bells and cymbals caused me so much pain. This headache is really kicking my body, mind, and ego. There were a few moments when I was sitting there that the things that were harming me made it nearly impossible to enjoy the things that were beautiful. Additionally, attending both concerts (Saturday night and Sunday afternoon) has left me exhausted and my headache exacerbated. Not sure how long I can keep this up...life as I have been living it (full-throttle). Am planning to call my MD to get a referral to another neurologist this week and contemplating using some sick leave. I need to find something to help me better manage the side effects of the headache that the Indomethacin does not cover. I have been getting nauseous and very exhausted by the end of each of my weeks in the classroom. Winter break is coming up soon and I am seriously tossing about taking sick leave to try to seek treatment in a bigger city at a bigger hospital. I need a solid diagnosis and an expectation of what my life will look like with a non-ending headache at 6 months, 1 year, 5 years. I am constantly bombarded by stimuli and triggers (florescent lighting, loud noises, smells, stress) in a high school of 1100 students. Just walking through the cafeteria at lunchtime is becoming torment for me. I am also concerned that if enough people realize I am sick...I will seem weak. Showing weakness is not a good thing at my school. I simply do not know how long I can continue to push on full-steam (which is the only way I have ever known) while dealing with the exhaustion of my body fighting an invisible headache every minute of every day ad infinitum (forever). I feel like I have little to no control of anything anymore. *sigh*

Thursday, December 1, 2011

Headache Diary: 2 months, 3 weeks, and 3 days

I have not posted on here in almost a week. It has not been great. Work has been hectic, the headache has been worse, and I have not been in the best of spirits. My headache has been felt all day long the past three days or so. It does not hurt, the Indomethacin takes care of that, in as much as I seem to have some kind of neuralgia going on with the nerves of the Trigeminal Nerve cluster in the right side of my face, and an extreme sensitivity to light and sound. I had to assign "quiet work" for my students today and wear a new pair of sunglasses that I just got yesterday that completely block out the light coming in around the sides of the lenses for the drive home. As for the nerve/sensation issue...I keep getting little "zaps" down the right side of my skull and up onto my face as well as a combined sense that my right side of my face is partially numb, yet stinging at the same time with a very frequent crawling sensation like something is touching my face with twinge inducing feet. I do not mean to say in any way that I think things are crawling on me...I just cannot explain the feelings that the nerves in the skin on the right side of my face are having in any better words. It is likely hard for people to understand what I mean, but I would wish that you never know for yourself what this is like. I would not wish it on anyone. I co-teach two classes per day with another teacher. We were talking after one class today and she suddenly asked me if I was okay. She said that the right side of my face had turned a flushed color for a brief instant and then went back to normal. All I had noticed was that while I was listening to her at the moment she stopped our line of discussion to check on me was that the room seemed really bright for just an instant...apparently the flushing of my right cheek is something new and coincided with me thinking the room was bright. Lucky me. On a last good note, it is almost the weekend.