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?

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.

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.

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.

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.