Saturday, December 29, 2012

Tossing Words: Year's End

I have learned a lot this year. A lot about hope. A lot about pain. A lot about enjoying the simplest things that we seem to take for granted. I now know that I did not get well this summer. I did not beat Trigeminal Neuralgia with Persistent Headache this past summer...it was apparently just on vacation. It has now returned home; for over 2 months now. I must just deal with it.
I have learned much about business, and how difficult it is. How something like making partnerships with the wrong Domain Hosts, or distributors, can lead to a constant headache in a metaphorical state. It is now also known that the only way we can learn that partnerships are bad is by making them...and then liberating yourself from them.
Lastly, I learned that sometimes leaps of faith can pay off. Franklin over at Bloggermint.com was that leap of faith this past weekend, and it paid off. If you need someone to help you with coding on your Blog...he is the guy to contact. He helped me go out on my own and create my own webstore this weekend instead of relying on poor customer service and limited options at my old Domain/Store Host. Really went above and beyond, and it is appreciated. My store is now working fine, and I am beholden to my old (lame) shop provider no more. Freedom feels nice, unless it goes wrong, then it's just nail-biting. After a few hiccups (user error on my end) the Blogger store template that I got from Franklin is working great, and Cuppa's Coffee and More is up and running again with less overhead as I am not paying $20 a month to my old provider so that they can direct me to FAQs for every little (and BIG) site issue. Thanks Franklin. Though I have known you for a little more than 24 hours (and only as an online business aquaintance), you have done more for me to help my business in one day than others have done when I've paid them monthly for a year. For making the end of my year great, again I say thanks.

Sunday, November 25, 2012

Seems Saying "Hello!" to Winter-like Weather Means Saying "Hello!" to Pain

Time over, I had read and heard from fellow sufferers of Trigeminal Neuralgia that I would be lucky if it ever gave me a break in pain. Seems I was lucky from April 2012 until just recently. With the return of Fall months turning to cold winter-like chill, my pain has returned to a 7 or 8 from Nil. I am currently taking the treatments, or comparable ones, that I was when pain left me to enjoy the Spring and Summer. For some reason, however, with November and Thanksgiving...like some real life guests I suppose...pain and unilateral headache have both decided to return to me just in time for the holidays. So as before, this Blog (though neglected it has been for a few months whilst I was out enjoying all that is not behind a screen) will have life renewed as I again battle and document my time with Trigeminal Neuralgia and Unilateral Headache.

Friday, August 31, 2012

How my favorite hair product might have permanently changed my life...

Am up early this morning pondering about vanity and its affect on one's health. 4 words: Paraben, everyday, ten years

I regularly think now of possible causes, things, that could make me go from normal 33-year-old guy last fall to the 34-year-old guy with the never ending headache and depleted endocrine system levels of last winter who didn't know if he'd ever be able to work again. That guy who had to take a month's leave of absence because some unknown force had knocked him on his hind end. We had found a treatment that made me feel human again, made me able to do things like walk outside without being absolutely and painfully blinded by sunlight. Able to even saw, and lift, and pound to build a backyard greenhouse. A way out of all of that without ever knowing what got me there to start with.

Choices and ponderings over the past 6 months have led me to change the course of my life this summer. Led me to analyze the things in life that are needed, that are wanted, and that make me happy. My concern for happiness, mainly fueled by the background fear that without knowing what obliterated my endocrine system to start with, that my newly refound energy and health could all slip away without warning. In some ways my returned feelings of vigor through treatment left me with a new found lease on life. One I can imagine that is not dissimilar to living under the shadow of a critical condition only to be told that you have now been cured...we just don't know what made you sick to begin with. And if I am honest, I have not ever been completely well over these past few months. The neverending headache has threatened to return several times throughout the late spring and summer. The nerves in my face occasionally tingle and pang and I have momentary bouts of extreme light sensitivity...just like the bad ole' days.

I Googled something yesterday which led to reading several health articles, that lead to reading a couple of medical studies, which led me to learn of three chemicals that have been banned in India, Japan, and banned from use in things like shampoo and hair products in Great Britain for their drastic and negative effects on on the human and mammalian endocrine system. Yet we still use it regularly in America despite the warnings of foreign studies due to one thing, it can keep our products shelf-worthy for months after being cheaply produced in a lab. One article, from a doctor, citing four medical studies said that if anything you use has methylparaben, propylparaben, or butylparaben in it...throw it immediately in the trash.

That warning, throw it in the trash if your product has even one of these chemicals in it, keeps ringing in my head. After a brief trip to the medicine cabinet I found one of the "parabens" in my deodorant, one in my shaving cream, and TWO in my favorite hair glue. I have used that same Hair Glue every day (sometimes multiple times a day) for the past ten years. What if the product that has given me my signature spiky 'do has caused all of this. Upon my last visit to the doctor, four months of hormone replacement therapy showed some improvement, but not as much as my doctor felt that it should have. I have used my favorite hair product, with both methyl and propyl paraben in it, every single day of my treatment.

So, I guess my year of changes continues. Last night I went through my bathroom products and threw away everything with parabens of any form in them. I was, thankfully, left with an all natural deodorant from Tom's of Maine and a far inferior pomade that "might" handle my crazy hair half as well as my paraben-ridden "Got2Be Glued". Feeling a bit better, though frustrated that my year of change (health, lifestyle, car, career) may have been caused by my own vanity. Yet, there are also multiple studies, showing that estrogen cannot be stripped from public water supplies through the normal processed used in US water treatment plants. Why do I suddenly shift to this in this post? Because paraben is a xeno-estrogen. It is a cheap, sythetic (some articles said "mutated"), lab created estrogen. While I have been rubbing it on my head every day for the past ten years in my favorite hair product, it doesn't explain why my doctor is now treating six men other than myself for this same condition in my small community. She is baffled and joked that she could get the Nobel Prize if only she could figure out my there is this sudden onset of this condition in my town when nine months ago I was the only one that she had ever seen in all her years of doctoring. I do not like where this line of questioning is leading me...not even sure how to get our water supply tested for it. Guess we take it one step at a time. I get my endocrine system levels tested again in late December of this year. I am going to make every effort to not use any products with parabens in them between now and then. Wonder if it will help?

Here is a link to one of the "Men's Health" style articles that led me to reading actually medical studies for part of my evening last night. This article is in no way particularly scholarly, but it was a spring board for an evening of reading studies on testing of parabens on rats, men in foreign countries, and health effects of male exposure to xeno-estrogens and other forms of estrogen in high doses: http://www.howtoincreasetestosterone.com/blog/730/men-is-your-shampoo-causing-low-testosterone/

Saturday, May 26, 2012

Rudeness and Tobacco Smoke at the local Dollar General....

I shopped at the West Milford, WV Dollar General store today. When I got out of my car the employees (2 men) were standing outside, right at the front doors, smoking cigarettes. I said something to them about the smoking ban within 20 feet of a public entrance in Harrison County, WV where the store is located. They said they were aware. When I said that them smoking at the doors made me less likely to shop there, I was told that there were other stores I could shop at if their smoking bothered me. It is illegal, they were disrespectful, and I am likely not shopping there in the future. I mean, I live in the town where the store is located and it is our only "real" store aside from a small gas station and an ice cream shop. I like having a Dollar General in West Milford, but I do not feel that we should be subject to the airborne carcinogens of the employees every time we run in for milk or other sundries. We are niche clientele for that store. West Milford IS their business, and I have shopped there often. I am in disbelief that I would be told by the cashier (who was also outside taking a "buddy smoke" whilst on the clock) that I could drive to Jane Lew or Clarksburg if I wanted to shop at Dollar General since I didn't like their smoking at the doorway. That is a terrible business practice. There were customers in the store and the employees were all out front smoking, literally 5 feet from the doors, sitting in folding chairs that were out there on the sidewalk sale. There were racks of clothes outside too...all of that stuff is tainted with cigarette smoke now. I also posted commentary about this on my Twitter and Facebook statuses and have received comments from other residents of my town who have had similar experiences. Please do something to make our store friendlier to customers who abhor smoking. We should not be subjected to the rudeness or the cancer causing smoke when we try to pop in for groceries. Additionally, and possibly worse, we should not be chastised for pointing out offensive behaviors of employees who are blatantly breaking public health laws and employee codes of conduct. He should have apologized to me for offending a regular customer rather than telling me I could not shop there again.

Sunday, April 22, 2012

Update: The headache is mostly gone....

It has been just over two weeks since I began my Androderm treatments. My headache is now completely gone on most days. I do still have to manage old triggers (flashing lights, fluorescent lighting, crowd noises, etc.), but overall my existence is much improved. My facial pain has decreased as well, but still sets in if I get really tired or have not eaten spicy foods enough that day. Capsaicin from hot peppers does still help my facial pain dramatically.

My new found "old self" has inspired me to take a new adventure. I have opened a web store called Cuppa's Coffee & More. It is located at http://www.CuppasCoffeeAndMore.com and even though I have not sold much yet I am feeling good about the adventure. Hopefully it will at least supplement my teaching income. If it does really well...who knows where my future may take me. Hopefully that future remains headache free as I continue to supplement my testosterone levels. ~Fred

Monday, April 9, 2012

Update: My neurologist might have been wrong...

Following a visit with my General Practitioner last week, a series of less commonly run blood tests yielded the discovery that my Testosterone was very low. For men of my age my levels should be 348-1198 ng/dL. My level was 270 ng/dL. With this discovery, my doctor is supplementing my testosterone with a product called Androderm. Within 48 hours of beginning treatment my headache and facial pain has both improved drastically. I think it is premature to state that my symptoms are completely gone, but it seems I have found help for my condition. I am feeling a great deal better within just a couple days of treatment. I am still keeping an eye on my exposure to old triggers (crowd noises, flashing lights, fluorescent lights, etc.), but I seem to be on an upswing. I have only had to take one Indocin a day for the past couple of days instead of 3 light I had been. ~Fred

Friday, March 2, 2012

Recap of Hospital Stay 2/27 - 2/29/2012 for Headache and Trigeminal Pain

My neurologist is admitting me tomorrow for "exploratory" and "therapeutic" treatment for my TN2 pain and persistent headache.

I wanted to let everyone know that after a visit with my neurologist Friday 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. It can also have some pretty extreme side effects, thus the hospital stay. 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. He is concerned that if the pain continues at the high level that I have been operating under lately it will permanently and further damage my Trigeminal Nerve Cluster and/or my Central Nervous System. Thus, another reason for the hospital stay.

Update: Magesium IV did nothing. Prednisone IV gave no results. DHE-45 gave me a headache (new) on the back of my head 10 minutes into a 30 minute treatment. They stopped it. Said it is not for me. Had a thin slice MRI with and without contrast. Awaiting my results. Took my first Tegretol at midnight, but am still getting Indocin too. I feel no different yet. Maybe tomorrow.(02/27/12)

Ran Magnesium IV again this morning with no results. MRI (Thin Slice) was "normal". Trying DHE-45 again this afternoon. Awaiting EEG results. Mag and DHE-45 are to attempt to bust the headache.(2/28/12)

12am dose of DHE-45 has exacerbated my normal headache. Och! Painful! So inconsistent. So frustrating.(2/29/2012)

Headache pain is still high this morning after that Midnight dose of DHE-45. This is the closest my headache pain has ever been to rivaling my TN2 pain. Even the Magnesium burned going in this morning and brought no headache relief. Additionally, I am feeling "crawly" sensations in my hair on the right-side top and on my right cheek that hurt if I touch them. My right eye is already at a smolder as well. Still awaiting my EEG results, but I think it is time to cut my losses and go home.(2/29/12)

The doctor has been to see me already. We are done with the DHE-45, done with Magnesium, will only receive Indocin and Tegretol this morning. Said he will call my neurologist here in a while and then work on releasing me by midday.(2/29/12)

Update: What a mess the past three days have been. The best thing I can say about it all is that "I am home." I feel like I have been beaten up and drugged (if I knew what that felt like I would imagine it feels like I do right now). I have not had regular sleep in three days. I am bruised and sore, and I take medicines for my condition that need to be given on a regular basis...that did not occur for the last three days. Needless to say, I am not better (not that I expected a magic cure), the DHE-45 treatment to rid me of the headache portion of what I have been going through did not work, it in fact caused my headache to get a good deal worse with every dose. At least I am home. I may need a couple of days to get myself back on the regimen that I need to be and get all of the other "headache abortives" they were giving me out of my system. I have to say that the nurses at Ruby on the 7th floor West are awesome. That is about all I can say in regards to my stay there. My care doctor ended up being a 1st year resident who came to see me for about 5 minutes at 6am and 6pm, and talked about me during rounds at 11am yesterday, but not to me. When speaking to me he looked around saying things like, "Good good" when it was inappropriate and "I see, I see." Today, all the other Docs on the Neurology team talked to me and my 1st year Doc hid in the back of the pack, silent. He barely looked at me when he gave me my walking papers this afternoon that say DHE-45 treatment for headache "failure". My Dad took me to get my new prescriptions, then dropped me off at my house after being a great guy and spending the day with me, and I immediately went into my office, laid on my leather sofa, and caught 4 hours of the sleep that I have missed over the past 3 days. Collectively I think I slept maybe 6 hours between Monday and Tuesday night...maybe caught another one during the day. At least I am home...bruised, achy, and all over sore, but at least I am home. Thanks to all who kept up with me over the past few days. I really appreciated know that I had all of you out here being concerned for me.(2/29/12)

This is a collection of postings that I made to both Facebook and LivingWithTN.org during my stay for treatment of my persistent headache and my Trigeminal Neuralgia pain. Their primary focus was the headache. My neurologist felt, prior to my stay, that the headache and the nerve pain were two separate things. He believed that if we could calm the headache we could focus on the nerve pain. I do not share his feeling on this. I think people, even neurologists, are under-educated about a variety of Trigeminal Neuralgia called Type II Trigeminal Neuralgia. If one were to Google that illness they'll find two things. One, there aren't many sites that give it an accurate listing on the search engine. Two, it is a variety of Trigeminal Neuralgia where the patient often feels more constant burning or crushing pain than though with the "Classic" variety. Additionally, patients often experience a constant, persistent headache with migraine-like symptoms. This headache, however, is not responsive to traditional treatments for migraines. I, now more than ever, believe that my Trigeminal pain diagnosis should be that of the Trigeminal Neuralgia Type II Variety.

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 well...to 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 managing...today." 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 no...as 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 teach...it'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.

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.

CAUSES:

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 away...as 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 Fred...at the doors...you 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.