Sunday, January 22, 2012

Trigeminal Neuralgia w/Headache Diary: Guess a Change of Entry Titles is in Order

Apologies for missing several days of posting. I have been back in the classroom since January 4th, and it has been challenging. I returned from my leave of absence to find wild stories about why I had taken off in December, just before Christmas break. They were quite sordid. My longterm sub had tried the "I'll be your BFF" approach to teaching. That resulted, over the course of two weeks, in my students all unlearning all my classroom rules and expectations that 4 months of classes had instilled them with. Apparently, I had been in an asylum according to some. I had also had brain surgery, and apparently sat at home playing Skyrim all day...even though I did not get it until New Year's weekend as a belated Christmas present from a family member.

To clear the air, I tried to explain in layman's terms what I am dealing with to my students. That may have been my biggest mistake. Some of my students grew very attached to the Sub that let them listen to their iPods, make calls from their cell phones, and text as much as they pleased...even though all of these things are in violation of the code of conduct at our school. To some, my classroom rules (which are basic school rules) are now intolerable and they want me gone again and that "I'll be your BFF" substitute back. This has led some of them to research my condition. You would think that is great, right? Well, it hasn't been. Those of my students that have researched Trigeminal Neuralgia and loved the "BFF" substitute are now trying random triggers that some people with TN experience to see if they can make me so sick that I have to take time off again. I have seen ways that teenagers can be cruel...comes with the teaching in High School territory. I, however, am a really nice guy and did not expect such a negative reaction to my return. This has made work very difficult as my classroom management has now been involving curbing behaviors that are specifically targeted toward "getting me". I was not expecting this. I do not intend to say that all of my students are doing this, most have been very understanding. There are just a few that really seem to not like me or respect my authority now. Additionally, it seems my normal way of handling students that disobey classroom rules is being handled differently by my administration. I cannot help but think this has something to do with them being aware of my disorder. It seems now when I make a discipline referral just as I did before TN, I now am expected to sit down and talk to my students about how what they are doing is hurting me before they get further discipline. These students are few and are acting like bullies. Understanding the psyche of a teenage bully, I do not see how these "extra steps for me only" will do anything other than give them more fuel to use in their efforts to get to me. Other teachers do not have to meet this expectation and it seems quite unfair to me.

I have been trying my best to do my duties and teach Ancient History to my students regardless of these recent obstacles. I have lamps in my room now, per doctor's orders, as fluorescent lights are triggering a reaction of my right Ophthalmic nerve. However, stress causes my face to ache. Being tired makes it worse. I really have to find some tools to help me better avoid triggers throughout my day if I am to continue being successful. My face hurts so badly when I get home most nights now that it consumes my thoughts and actions. My medication seems to take the edge off, but it does not rid me of the effects of my TN.

Monday, January 9, 2012

Headache Diary 4 Months, 2 Days: Diagnosis Day

Finally, a diagnosis: Trigeminal Neuralgia. Trigeminal Neuralgia (TN) is a disorder of the 5th cranial nerve that causes a stabbing or electric-shock-like pain in parts of the face. The pain of trigeminal neuralgia comes from the trigeminal nerve. This nerve carries pain, feeling, and other sensations from the brain to the skin of the face. It can affect part or all of the face, and the surface of the eye.


Trigeminal Neuralgia may be caused by: Multiple sclerosis, pressure on the trigeminal nerve from a swollen blood vessel or tumor, but often no specific cause is found. Doctors are more likely to find a cause if the patient is younger than age 40.

So what does all of this mean? For starters, some knowledge for me and some peace of mind. Living without diagnosis has been intolerable. I have felt like I have known there has been some invisible thing wrong with me that has been causing me great amounts of pain and discomfort, but I had no way of proving it to anyone. Dr. Watson at WVU Headache Clinic has given me a powerful tool today to help me help myself deal with this issue that has been impacting my life. I left WVU Headache Clinic today with a diagnosis, new meds, some rules for work regarding lighting, a headache, and a little bit of relief. A have a disorder called Trigeminal Neuralgia. You learn something's name and you have a little bit of power over it.

I also have a chronic headache that is partially responsive to a medication called Indocin. The headache could be its own entity, or I could have an alternate for of TN called Trigeminal Neuralgia Type 2 or Atypical Trigeminal Neuralgia which often has a constant unilateral headache accompanying it. We are not yet sure what is causing either of these, but the Neurologist at WVU wants to take a medicinal route first to try to tame the neuralgia. He thinks it might be causing the headache to trigger on a daily basis. There was something odd at the base of the Trigeminal Nerve on my MRI that UHC did not even mention. WVU Neurology is not sure if it is something to be concerned with or may be an "artifact" on the film. They are consulting with their radiologists today and will let me know today or tomorrow. We have upped the dosage of the Indocin to something he says might actually work and added Neurontin for the TN. Additionally, I will no longer be taking Topamax.

Today is a positive day, so I'll not dwell on anything negative too long, but going to WVU Neurology as compared to United Hospital Center was like the difference between night and day. Dr. Watson and his team spent over an hour with me on my initial visit today. They were benevolent, engaged, and seemed to be invested in helping me. UHC Neurology processed me like I was cattle. They were condescending when I tried to self-advocate at UHC, and an appointment with their neurologist never lasted longer than 10 to 15 minutes. What a difference!

Sunday, January 8, 2012

Headache Diary 4 Months, 1 Day: Happy Anniversary to Me?

How time flies...when you're havin' fun? No, none of this has been fun, but I realized today is four months and one day since my one-sided non-ending headache began on September 7, 2011. I am FINALLY getting to go see the specialist in Morgantown tomorrow. I played cancellation tag with other patients (by calling nearly every day) until I got my initial visit changed from January 25th to tomorrow, January 9th. I have been assigned to the Director of the WVU Headache Research Clinic. Hopefully that is a good thing. He has a nearly dozen page document with my full history since onset, all the medicines that I have tried, and the successes and mostly failures of all treatments that we have tried thus far. I am also bringing a disk of my MRI and CT scans from earlier this fall for him to read, himself, onsite. I am trying not to get my hopes up, but I really need a diagnosis. I think my workplace needs a diagnosis, but I will get to that in a moment.

As mentioned in earlier posts, I took the month of December off at the advisement of my General Practitioner. During that time I did not get any better, but realized through the few social outings that I had made that my suspicions about fluorescent lighting were correct. Whenever I am in the presence of white or blue tones of fluorescent lighting, especially, my headache and whatever this nerve issue is that is accompanying it in the right side of my face exacerbate very quickly. The longer I am around them...the more ill I become. Remove myself from the fluorescent light source, and I return to my normal state of level 5 or 6 headache which I now live with on a daily basis from the time of waking to the time of drifting off to the land of nod.

This lighting issue made me physically ill at a dance performance back at Christmas that my daughter had at the local VA Nursing Home, and at my Grandmother-in-law's on Christmas night. Both times, removing myself out of doors and out of the fluorescent lighting even for a brief time returned my headache to its normal state of aching. This is not to say it made it go nothing thus far ever has made it go away, but it returned to the level I have grown accustomed to feigning that I am a functioning human that can put on a smile, socialize, and go about my routines whilst only giving people glimpses of the ever-present pain that is in my cranium unless they give me opportunity to verbally express it.

The blue and white fluorescent bulbs are everywhere in the High School where I teach, unless they have neglected to change an older pink or yellow hued tube in an overhead light. I was very anxious about this over New Year's weekend when I knew I would be returning to teach in a few days and did not want to make a brief entry and re-exit immediately due to the lighting being intolerable. So, I went out and bought two 72 inch torch lamps and two desk lamps prior to returning to my room. I also bought the spiral CFL bulbs that mimic incandescent light (I can handle that wavelength better) in 65 Watts for 3 of the lamps and one incandescent 25 watt bulb for the lamp that I was placing on my desk. The difference between the stark, overly lit hallway, and my serene room is now very noticeable. I can function in there, not headache free of course, but without the additional stress of the lights making my headache worse. The students have not complained to me at all. In fact, I have gotten many compliments on how nice it is compared to other rooms. Additionally, not a single student put their head down to sleep all week. I would like to claim that that is because I am amazingly interesting, but when I ran the fluorescents there were kids that put there heads down from time to time. This is all sounding too positive though. Real life never works so smoothly, and I mentioned that I really fear that I am going need a diagnosis for my employer's sake and understanding.

I could just pocket the cost of the lighting as a comfort expense for me, but I sort of feel that my school should pay for it. I have been told they will pay for it...on its face. Then I talked to our financial secretary yesterday, apparently they do not like the retailer that I used to get the lamps and therefore, because I did it without asking, I might not get reimbursed. Strike one on my serene lighting adventure. Where is strike two? My Principal mentions to me that he went past me room the other day, and without stepping in, it looks too dim in there as compared to the hallways. He is afraid a parent is going to complain that I am running the lighting too dim in relation to the rest of the school. To resolve this, since white and blue bulbs seem to be my Kryptonite, he has ordered the janitor to get other colors (green, yellow, pink, etc) in more expensive varieties if he can get clearance from downtown and do half my room in all one color and half in the other...and experiment to see if I can tolerate running at least half my fluorescent lights. And...I can already feel this adventure going south. Someone mentioned that I may have to resort to using the ADA to muscle my using of lamps in my classroom. I really like my administrators, but this disorder I have (which will hopefully have a name tomorrow) is invisible and I can see that there are people that look at me and see a decently healthy, smart, well-dressed guy and just think I am a hypochondriac suddenly, or that I am trying to pull something over on everyone.

This thing is awful. I have already missed so much this fall that I cannot get back. Just yesterday, my daughter had her first YMCA league basketball game. I walk in, the gym is too small for the number of people. The sound is too loud for the heightened hearing that I have been having and my head instantly starts to pressurize. The lights are giant, odd, orange-ish vapor lights of some kind that most people wouldn't notice are buzzing audibly. Everyone was talking. It was seemingly 105 degrees in there. So, stand in the hall the can watch from there. "Why does my head feel strange here? Look that the lights in the hall Fred." They were all the same cheap blue and white tube bulbs that they've been putting in at school. The blues do not even fire evenly. I am not sure how most people do not notice that. I cannot believe we closed down all the incandescent lighting factories. We are only making and will soon only be selling LED and Fluorecent lighting in the USA. People could take five minutes and find thousands of blogs or bulletin board entries on people with fluorescent lighting sensitivities. I felt so guilty for telling my wife that I had to go out to the car. Remove myself from the stimulation. After about 30 minutes I came back in and watched the last few minutes of her game. I do not know if my daughter knew I went out, but eventually I know she will notice. I fear she will think I am feeble and weak, or worse that I do not care enough to come to her things and watch my little Pixie in action. I am so proud of her. Why would I fake this? I need a diagnosis. I hate this disorder.