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.

Friday, November 25, 2011

Headache Diary 2 months, 2 weeks, and 4 days: Black Friday Blahs

I am not well today. I have taken my medicine, but I keep getting a jabbing pain on the right-side top of my skull. Additionally, I have had a lot of facial de-sensitivity today and the primary spot that is somewhat numb is at the very back of my tongue on the right side and the right side of my throat. This keeps causing a bit of nausea. I think my internal triggers are treating it like the natural numbing one gets right before they vomit. That is unpleasant, I know, but I am writing these to mark my experiences. This is what I am experiencing today. I have company over that I really want to enjoy, but all this is making be a bit down. Thank you never-ending headache.

Tuesday, November 22, 2011

Headache Diary Day 75: Not TMJ

Just as I am still somewhat new to this never-ending headache (or having anything wrong with me in general) we are still ruling things out. I went to the dentist today for my 6 month cleaning and was due X-rays as I had not had them done in a good while. The dentist says that my headache is definitely not a symptom of TMJ or anything dental in nature. He said my joints look great and there is no mis-alignment of my jaw whatsoever. After telling him about my headache for 75 days and the reduced sensation in the right side of face off and on daily, he says that definitely sounds like dysfunction of the trigeminal cluster of nerves, he cannot imagine dealing with a nonstop headache for 75 days, and he wishes he could tell me it was TMJ. If it were that...he would know exactly how to fix it. Oh well, check one more possibility off the list. All things again point to Hemicrania Continua.

Tuesday, November 15, 2011

Headache Diary Day 69: Headache This Evening

Well, the headache was strong enough to push through the Indomethacin this evening. I was able to make it until about 8pm, at which point I felt that sleep would be the only thing that might fix my headache. Time was I could lay down when I had a headache and wake up in an hour or so and feel great. That was pre-onset some 69 days ago. This right side headache is so stubborn, so...Ugh. Suffice it to say I went to sleep with my head throbbing and woke up after it was time for my evening dose. Headache. Ever-present, more stubborn than I am, headache. I have now taken my evening dose late, but given the strength of this thing this evening I am not sure I will see relief before morning. I hope this is just a fluke and I am not developing a tolerance to the Indomethacin already. I have read that some people with Hemicrania Continua develop a tolerance to the only medication that treats it and eventually max out on the dosage. At that point it will do them no more good and the headache is untreatable. Someone said to me today that that will not happen, doctors and pharma people will make sure that there is another treatment or drug for this disorder. I think that is very wishful thinking from someone who does not have this. In all honesty there are far worse conditions that do not get adequate research to find a treatment and a cure. I am not sure that this one has anyone's priority. *Sigh*

Sunday, November 13, 2011

Headache Diary Day 67: To Sleep, Per Chance to Dream

I have slept so much this weekend...and accomplished nothing. Though I have nothing due yet, I should have been reading for my graduate course. I should have been grafing papers, but instead I slept a lot and thought a lot. I have no doubt that lessening stress might alleviate temptation for some of the triggers for the sometimes acute exacerbations that I have as overtones to this seemingly never-ending  right-side headache. That stated, I cannot see my current life choices and occupation yielding a less stressful existence. When thinking lately about what would make me happy and less stressed (though there is no indicator that stress is a factor for hemicrania continua), contemplating education and the forseeable future of it is nonresultant in a less stressful outlook. Finding motivation to plan and grade gets more and more difficult. There is no doubt that I can teach...the ones that want to learn, but that chunk of the school population seems to get less and less in number by the year. I have no answers right now...about anything...which only adds frustration. I have been dreaming of opening a shop, but I am not sure that is advisable or possible in our current economy. Sleeping seems to increase my headache and my dreaming...no answers.

Friday, November 11, 2011

Headache Diary Day 65: Today's Catchy Title is not Catchy at All...

Am having a weird day. No school today as it is Veterans Day. Got up, took my 6am dose of Indomethacin and then slept 'til 10am. I thought the sleep would be much needed and have been welcomed by my body and mind. Instead, the right side of my face has had an odd warmth to it and reduced sensation all day. Have also taken my 2pm dose as well, and my head does not hurt per se, but it literally feels like someone has their thumb on my right temple and is applying gentle constant pressure.

Monday, November 7, 2011

Headache Diary Day 61: Home Again Home Again...

I have been out of town for the couple of days and have not blogged...mainly because I have been busy and not in too much pain. That is in no way meant to suggest that my headache is gone. This is day 61. I have crossed the two month threshold. People mentioned that I looked better this weekend than when they had seen me a month ago. One word answers that: Indomethacin. When I am able to take it, alone, every 8 hours everything is absolutely manageable. If I miss/delay a dose I know very quickly. Last night, for example, I fell asleep in my hotel room whilst working on a Graduate course I am taking. I was late for a dose when I woke up and boy did I notice. I hate that it sounds like I am dependent on this prescription in order to function, but it makes SUCH a difference. I am good at the moment. It is 7pm and my face is starting to get that numb sensation that I get before it is time for another dose. 7pm is a bit earlier than usual, wonder what the headache would feel like right now if it weren't being masked?

Thursday, November 3, 2011

Headache Diary Day 57: Side Effects Include Pirate Swagger

Had a wild ride today on the Zonegran. Suffice to say I know how Jack Sparrow sees the world w/o the Rum. Headache was full-blown all day, I had all kinds of swagger (felt like sea legs), hands kept turning bleu and getting cold. After three attempts I got ahold of my Neurologist's nurse who confirmed with the doctor that I am to take no more Zonegran. It was somehow overriding the Indomethacin. What a trip...my kids were all great today though. Toughed out the school day. It is now after 6PM and the Zonegran appears to have entirely worn off. The Indomethacin is now working again and my headache has subsided. I still feel a little wobbly, but I am sure that will get better as well.

Wednesday, November 2, 2011

Headache Diary Day 56: Neurologist Knows Best?

I had an appointment today with my neurologist. He is still hooked on the idea that this infernal 56 day drumbeat that only subsides for 7 1/2 at a time when I take Indomethacin is some form of regular migraine. That is interesting considering the regular migraine meds like Imitrex and Depakote did absolutely nothing to it when taken for several days. The only thing that helps is Indomethacin...usually used as the last diagnostic step in diagnosing Hemicrania Continua. He feels that I am likely not suffering from the thing that diagnostically I meet the criteria for based on 3 points: (a) It far too rare he says, yet I have met three sufferers in the past few days that have been very helpful in easing my concerns and making me feel like less of an oddball. (b) I have been proactive and have not allowed the headache to go 3 months unchecked...only 56 days. (c) Lastly, he feels it is unlikely that I could possibly suffer from Hemicrania Continua because I am not a woman! I can find nothing that states that mostly women suffer from it. Am wondering if I am in the right place...with the right specialist. He added an anti-seizure med for me today to take with the Indomethacin. It is called Zonegran by its trade name. Thankfully, I was able to get the generic at my pharmacy. I have spent so much on trials of medicine that did not work and are now sitting in my cabinet...money wasted over the last 56 days. I am a teacher, I do not have money to waste. I will try this Zonegran as prescribed, but I am not eager. Am also not pleased that he wants me off of the Indomethacin within a relatively short time as its longterm use is not the best for my organs. I cannot imagine that a constant headache is good for my muscles and the big grey organ inside my skull either. Lastly, he mentioned that Lithium is a possible treatment if the Zonegran does not extend the effects of the Indomethacin so that I can drop to taking it only once a day, twice a day, or as needed. I am disinterested in taking Lithium ever. I am aware of the effects it can have on an individual. And...I still have a headache. It is getting close to time for my evening dose and I can tell. It is 7:40 Eastern Time in the US and I am starting to go numb on the right side of my face and the right half of my tongue. No reason for immediate concern...this happens every day approximately 3 times as my Indomethacin starts to wear off. Before taking it the right half of my face was simply staying numb all the time.

Sunday, October 30, 2011

Headache Diary Day 53: Friggin' Awful!

Okay, today is a terrible day. Well, in the sense that I slept in again and missed my morning dose for an even longer period. I simply cannot do this anymore. It is clear that I am going to have to become one of those regimented people that never sleeps in. This is very upsetting as I love a good long slumber, but I simply cannot have another day like today. I had to take my second dose about two hours early to even put a dint in this headache today that was caused because I did not get myself up in time to take my morning dose of Indomethacin. Worse than the headache, I let Cate (my darling 6 yr old) down today. I had had right side facial numbness and an odd sensation in my right hand and right foot all day. Even though I was feeling off, the headache was subsiding some and she was to go to a costume party that she has regularly attended the past few years. Kris needed to stay home and type so I was her transport. I had expressed the odd nature of my headache at various points of the day, but apparently had been too cryptic to make my concerns for going out clear to my wife and daughter. Kris got her ready, all costumed up, and I reluctantly attempted to take her to the party. I did not make it a 1/2 mile from the house before I became overwhelmed with everything being too bright and too loud. I got out of the car briefly at our local Post Office to pick up the mail and someone in the next parking lot over chirped their car locking device as they went into the local store. It honestly sounded like they hit it 7 or 8 times, but I know it was all just echo or my senses being off or something. On top of that, I got a good bit dizzy when I transitioned from the tinted windows of my car to the full light of day on my way into the Post Office. Needless to say, or possibly not as I do not know if anyone knows how I feel anymore, I could see no choice but to head immediately home. I am not sure if that was me being rational and knowing that I was in no condition to be out and about or if it was a panic reaction to the sensory free-for-all that I was experiencing. I feel like a total failure regardless. It is so frustrating that even when I think I have this under control with the knowledge that this is diagnostically HC and that I am on Indomethacin to treat it...it still manages to kick me in the teeth. People, myself included prior to 53 days ago, do not understand pain or those that suffer from it. I do not know how to explain it to adults let alone a 6 year old. I know Cate thinks her dad is Superman, as she should, but it is so painful on an emotional level to not be able to soldier on and put up the facade that I am made of steel. I fear that she will remember this day as the day I let her down, showed her my weakness, and I do not know who to speak to about it that would understand. Kristina tries, but I know it is frustrating to her as well as me that she has never experienced anything like this. I have difficulty dealing with the fact that this will likely last forever. By name alone Hemicrania Continua translates to "Hemi" (1/2) "Crania" (head) and "Continua" (continuous or permanent) headache. How do I explain that to people? How do I explain that I can be fine on my medicine for days on end and then have a day where I am useless? I am so stubborn that the thought of that last scenario alone angers me beyond belief. I do not want to miss anymore work than I have too, and I will already miss another day this week due to another follow-up with my neurologist. If I were one to believe in such things, I find myself worrying that I have somehow done something awful at some point and this is the universe getting even with me. I know that is unreasonable, but having a headache that I can only partially mask for a few hours at a time that will go on for the rest of my life also seems beyond reason. Ugh, I have spent too much time writing this diary for today...I am sure there are other things I need to be doing. Though, all I feel like doing is crashing in my chair and finding some Halloween Eve special do try to fall into and forget that my head is still slightly aching and that I let the most important little person on the planet down today. I have no idea if anyone is even reading this blog, but I have to put these things down somewhere. I find that the new me, Permanent Headache Man, is more frequently feeling nearly alone...with few people to talk to that aren't tired of not quite understanding what I am going through. It is clear that it is stressing the fabric of my family, my existence, and my psyche. I cannot allow any of those things to progress. I have to be the Superman that I wasn't for my darling 6 yr old, the hope for all humanity, again from this point forward. Wonder how I do that?

Saturday, October 29, 2011

Headache Diary Day 52: Sleeping In = Throbbing Skull

I finally got to sleep in this morning after running around every day last weekend and then teaching all week. In doing so, I slept 3 hours past my 6am dose of Indomethacin and awoke to a throbbing head on the right side. This only re-affirms to me that this is a permanent condition (Hemicrania Continua). Since the headache was full-blown...it took a couple of hours for it to go away entirely. That stated, the Indomethacin did its job once more and masked the headache until about 30 minutes from my next dose eight hours later. Will be up until about 1am tonight as my sleeping in got my schedule off routine for my medicine. Guess this is one way that this headache continues to run my life as of late. My schedule of waking and sleeping coincides with the 8 hour doses of the only medicine that has brought me any relief.

Tuesday, October 25, 2011

Headache Diary Day 48

I did not post yesterday as my headache is almost unnoticeable with the exception of about every 7 1/2 hours. I did run late in taking my initial dose of indomethacin this morning which made my drive in to school a bit rough (headlights). I also had a few brief moments of discomfort throughout the day. I suppose those would have been extremely intense had I not been masking the headache with medication. I am still grateful that my neurologist indulged me in trying treatment for this condition prior to attempting even more expensive migraine busters...which we now know would not have worked at all anyhow.

Sunday, October 23, 2011

Headache Diary Day 46: Nearly Pain-free

Better timing helped me to awake headache-free today. This afternoon, while attending a birthday party with my daughter, the nose tingling and lip numbness arrived at about 6 1/2 hours into my morning dose of Indomethacin. By the time I got us home from the party and ate a bite so as to not take the medicine on an empty stomach, it had passed the 8 hour mark and my unilateral headache without side shift had returned in full force. The medicine did not initially knock it this time, but I was able to get fully rid of it by napping for about an hour or so. Talking about my headache every day, or lack thereof, seems odd to me though I realize the importance of it. "Tossing Words" was not ever intended to be the public personal diary of a headache sufferer, but as this Blogger's life has taken the shift from being someone who is rarely sick to someone with a condition...so changes the Blog. I do not pretend to have many readers anyhow, maybe I am wrong about that, but I want to write about this as a testament to myself as to monitor my own condition and hopefully to help others. Had I allowed it and not self-advocated, who knows how many expensive and unnecessary paths my neurologist might have taken me down? He and my personal doctor were so sure this was a normal migraine and kept throwing things at it that work for normal migraine sufferers and everything failed. I am appreciative that he indulged my request to try Indomethacin before trying an uber expensive treatment like Amerge that would have, as it appears, left me still counting the days of an unrelenting right-side headache with an even emptier wallet than usual instead of monitoring a medication that actually helps me. I am generally not one to bandwagon along with people who self-diagnose conditions. I have always seen the value in the knowledge obtained through years of medical school, but this time the internet research of a layman (me) paid off.

Saturday, October 22, 2011

Headache Diary Day 45:

I awoke this morning after trying Indomethacin for the first time at about 6pm on Friday 10/21/11 and having headache relief for the first time in 44 days. Diagnostically, as Migraine meds were not working at all, it appears that I have a condition called Hemicrania Continua. This morning, after sleeping beyond the 8 hours that the Indomethacin capsule should have worked, I awoke with only a very mild right side headache. The second dose has now been taken. Here's to hoping that it continues to bring me relief.

Monday, May 2, 2011

One Less Boogie Man

When I heard at 10pm on a Sunday night that the POTUS would be addressing the nation in 30 minutes I knew it had to be something huge. What news cycle involved a 10:30 PM address? Exactly none.The next hour and some minutes of media speculation was painful. What would the big announcement be? Was it a national security emergency? It was mind numbing. What would I be telling my students about tomorrow? I was communicating with several teachers through social networks...all of us trying to limit our speculation as to what the news might be.

When the news finally came, I was reminded of a statement I had made to a group of my Civics students this past Friday. After a discussion on terrorism (which seems to regularly be on their mind), I had suggested that I felt that we would soon be told that Osama Bin Laden was no longer alive. I was, of course, basing this comment on the fact that he had been in such deep seclusion for quite some time. I was founding it on the point that he was no longer leaking video statements to the press. I had no idea that less than 72 hours later that announcement would be made. I watched in awe as our President made it known "officially" that our boogie man of the past decade was no more. I will not recount the statements of the President as he can relay the information far more eloquently than I. For those remarks one should watch the video I have included in this post from our Commander in Chief.

Let May 01, 2011 mark the date when President Obama gave the order and successfully accomplished something that the past two could not. Those who revel this event, as I believe it, do not do so for the death of a human being but rather for the ease of mind that a nearly supernaturally elusive figure has been captured and killed. Will this end the terrorist threats of Al Qaeda? Hardly. It will, however, show that this America with this American President is one that is capable of accomplishing enormous things. It may or may not be coincidental that May 01, 1945 marked the day that another boogie man, Adolph Hitler, was declared dead. May 1st is apparently an unlucky day for mass murderers.

Wednesday, March 30, 2011

It's April again. Here is my note explaining why claims that President Obama cancelled the Nat'l Day of Prayer are FALSE!

by Frederick B. Gerwig on Wednesday, 30 March 2011 at 22:29

It always amazes me how eager people are to believe anything about our current president that make him seem shady or un-American.

In April 2009 and April 2010, these emails and statuses claiming that the Nat'l Day of Prayer has been cancelled by President Obama have circulated. The are ABSOLUTELY false, yet year after year someone (likely a Birther, Becker, or Mama Grizzly) spreads this same old garbage to people they know.

Here is something like what the status will say...I am sure you will see it before May 05, 2011.

President Obama decided that there will no longer be a "National Day of Prayer" held in May. He doesn't want to offend anyone. Where was his concern about offending Christians last January when he allowed the Muslims to hold a day of prayer on the capitol grounds. As a Christian American "I Am Offended." If you agree, copy and paste no matter what religion you are.

The National Day of Prayer (aka US Law 36 U.S.C. § 119) is an observance initiated by Congress and signed by President Harry S. Truman in 1954. As it is a law, a President of the US cannot simply cancel it. It would literally take an act of Congress or a ruling by a judge to overturn it. That stated, the day has been challenged. In April 2010, a judge heard a case from the Freedom from Religion Foundation asking that the observance be ruled unconstitutional. The judge did just that, but an appeal was immediately filed...with President Obama's attorneys trying the appeal IN FAVOR of the Nat'l Day of Prayer.

If you need more than my word for this, try their own site: http://nationaldayofprayer.org/ They even have a ticker counting down until the exact second that the observance begins in 2011. Beyond that, Snopes.com is a fact checking website. They too have a story (with cited sources) explaining why this email/status is a FALSE claim. Here is a link if you want to see for yourself: http://www.snopes.com/politics/obama/prayerday.asp

As an educator of History and American Government it absolutely disturbs me that we, as a nation, have become so gullible that we will pass on these lies about so many subjects, get all worked up into a lather, and believe them as truth no matter how ridiculous without checking our sources. It actually concerns me less whether people practice this observance or not (faith or no it is each person's own business), yet it is important that we have a twinge of disbelief when things like this are put out there. Nevertheless, I do not mind being a fact checker for those around me. But please people, look before you leap into a big pile of bullpucky such as this without maybe simply Googling their "National Day of Prayer" site to see that they have a current site counting down to a future date. Additionally, if you ever doubt anything about something relating to a national law, perhaps ask a Social Studies teacher. I am sure you know one. We are the Jeopardy contestants of educators. You're welcome.

***Steps Down Off His Soapbox***

Frederick B. Gerwig