Friday, February 24, 2012

Hospital Admission for "exploratory" and "therapeutic" treatment of my Trigeminal Neuralgia and constant headache.

I wanted to let everyone know that after a visit with my neurologist today regarding my constant and worsening pain, I am being admitted on Monday of next week into Ruby Memorial Hospital for at least 3 days. I will go in on Monday and hopefully be released on Wednesday. The neurologist was not happy that my pain is constant and worse by the month. He feels my current regimen of treatment should be bringing me relief...not more pain. My BP was also up at my visit today, likely due to my constant pain. This is also a concern. On Monday they are going to perform a Thin-slice MRI, more thorough than the one I had in October at UHC. They are going to do an EEG based on some of the symptoms I am presenting, and if either of them show any oddities they are going to do a spinal tap. He says that he has no doubt based on my visits and physical examinations that he has done that I am truly in pain. He also does not doubt that I have a constant headache that has some migraine-like symptoms. That stated, he says both traditional Trigeminal Neuralgia and a migraine should wax and wane. There should be triggers and events...not constant and increasing pain. He said he wonders if my Trigeminal nerve is suffering from a state of "hyperesthesia" or an excessive sensitivity of a particular sense such as hearing, sight, or touch. He mentioned that it may not be damage to the Trigeminal Nerve, but rather something in my Central Nervous System that is causing this hyperesthesia of the Trigeminal Nerve on my right side and also of the nerves in the region where my head always aches. Lastly, he says my visit is "exploratory" and "therapeutic". They are going to give me an IV drug called DHE-45. It is a headache abortive medicine that he says is only effective in IV form. He also says it is the strongest headache medicine that they can give in WV. They will be trying other medications as well during my stay to see if they can find something that relieves my pain or at least lessens it. We have told Cate and she seemed to take it well. Please keep us in your thoughts next week and beyond. Fred

Saturday, February 18, 2012

5 Months, 1 week, and 4 days since this all started...

It's been 5 Months, 1 week, and 4 days since this all started. I know some have told me that I should not pay attention to how long I have been experiencing this blasted headache and the subsequent Trigeminal Neuralgia pains that now accompany it as them I say, "I love that you care, but these are now fixed points in time for me." It is not like I will ever forget January 9, 2012 either for that is the day that I was diagnosed with an old man's disease that I will have to live with for my entirety of remaining days. Fixed points in time....

I have been experiencing an intense amount of pain nearly every day for the past two weeks. Were it only the ever-present headache, but it has also been the intense smoldering sensation in my right eye, eye socket, and right cheek bone as well. I have felt that for all or most of every day for the past two weeks. It seems to occur with changes in light. Even tiny ones. I can be looking over the field of my students in the classroom and notice the light-shine of a cellphone screen to the accuracy of pin-pointing which student it is exactly. Even that little bit of light differential in a lit room tweaks my pain momentarily. Light seems to be the worst of my triggers. My ophthalmic nerve must have a direct line to the agitated center of my Trigeminal Nerve ganglia.

Some of my colleagues have mentioned that I must be doing better, as they have seen me out and about in my school more during the day. To them, the ones I care to explain it to, I have said that it is not that I am better, but more so just surrealistically numb due to the intense levels of pain I have been experiencing daily. To many who ask how I am from time to time I now say, "I am" It seems a better response to me as I am not sure that they are really concerned in as much as they are just engaging in niceties with a colleague. My students, a large number of them anyhow, now know when I am having a tough time of it or not. Their behavior and sound output, for the most part, improves on days when they can see that I am not doing well. That stated, I have been to work every day lately...pain or I feel that I must push through if I want my kids to learn anything. Additionally, I feel compelled to show my employers that I am valuable. In the back of my mind I am concerned, however, that if I am there every day they will think I am better...or was not ill to begin with. The internal struggle that goes along with this disorder is almost as hard to deal with as the pain.

It is an invisible disorder unless one is showing the outward signs of less restful sleep and constant pain. Admittedly, I constantly feel that I am being judged as to whether my illness is real or not. I do not mean that to sound like it does...heightened paranoia, but I feel like there are those in my district that are waiting for me trip up. I feel more pressure to perform than I used to, and that is saying a lot as I have always been an over-achiever. Again, the internal struggle that goes along with this disorder is almost as hard to deal with as the pain. There is still a prevailing sense that I have that very few people, even the ones that are very close to me, actually understand what I am going through. It is a very lonely feeling.

Lastly for this posting, I had to make my first major decision involving living with the disorder this week. I dropped the graduate courses that I was taking to become a school administrator. I have found that teaching 5 days a week, putting on a brave face for others, and appearing to be social takes so much of my resources now that I do not have energy enough to study for an extra twenty hours a week. I have never backed down from anything in this capacity. I wrestled with the decision to do so for the past month before speaking to my grad school adviser about it day before yesterday. She said that she had no doubt that I could make a good administrator, but it was likely best for now to focus on the me of the present and try to find ways to de-stress and hopefully get well. I have referred to it as "Putting my ambition on a shelf," for now. I still have no idea where this thing will go. I go back to my neurologist next week to hopefully get more answers.

Saturday, February 4, 2012

Trigeminal Neuralgia w/Headache Diary: 4 Months, 4 Weeks Since Onset

Update: Was hitting new nines on a scale of 1 to 10 yesterday...

Apologies for not posting much lately. I expected to do more of a day to day type thing, but life, career, pain, fatigue, etc. has been getting in the way. Yesterday was one of the worst days I have experienced so far. Those of you that follow me on Facebook or follow a_Cuppa_Coffee on Twitter might have seen how my day began. For those who didn't, I was high-beamed on my way to school yesterday at least a dozen times...and I was driving with my low-beams on. I have very little need for high-beams anymore with my extreme sensitivity to light. Drivers do not do that to me everyday, I am not sure why yesterday was so different.

What began as an uncomfortable commute, soon turned into a new symptom/event in my journey through Trigeminal Neuralgia w/constant, daily headache(TN Type 2). The high-beaming already had my right eye throbbing and had escalated the right-side headache. By lunch the headache had spread from its normal place just behind my right ear, and added this sort of swirling, twisting pain in my right temple region. It was literally like someone had pinched my skin and muscle and had begun to twist it in a clockwise manner. By mid-afternoon, the new nines began. It started with the surface of my right eye getting warm, then very hot. It was not physically hot, but was experiencing a hot seering pain. One of my students asked me at the end of one of my classes why I was hiding my pain and continuing to teach on a Friday. I said it was because I have to's what I do. She advised me that the whites of my eyes were not white, but rather a pink color. Said that was how she could tell it was a bad day for me. I went to the restroom at the beginning of the next period (my planning period) and indeed the whites of my eyes were completely hued light pink. It was not really an appearance of "blood-shot", just more of an all over pink that I have not seen before.

That seering warmth in my right eye soon spread to my entire eye socket and on to my right cheek bone. At that point, it intensified to what can only be described as a smoldering fire. I taught 2 more classes with the sensation of my eye, the socket, and my cheek bone (honestly) smoldering at the edge of a fire. This is a new one, and it was PAINFUL. It can only be compared to the jabbing pains I get that last for a second or so. Only, it just...kept...going. I ended up hanging out in my room/ the office/ my neighbor's classroom until dusk as I did not think I could deal with the smoldering fire pain, the afternoon sun, and people's headlights. I chose smoldering fire pain and near dark for my commute home. It did not let up until late yesterday evening, though did not completely go away.

The smoldering fire subsided to my cheek bone only late last night, but then my headache came on in full force. Within being up for a few hours today, the right corner of my mouth has an almost numb feeling to it, my right temple hurts, and the outside corner of my eye feels like it is beginning to get that smoldering sensation from yesterday. Glad it is Saturday and I can better control my environment. If I were near fluorescent lights right now, even though they are now in the hall instead of my room at school, this would be so much worse already...I know it. So glad it is the weekend.

I am going back to my neurologist later this month. This will be something to definitely tell him about. If I cannot get the appointment moved up I will be visiting him on February 24th.