A Clean, Simpler, Start...

Chronic illness (especially when it takes 4 years to find someone to identify it and the identified illness has no cure) is expensive. Kristina and I bought in West Milford, WV nearly 15 years ago. We built a life for two young adults with full-time careers and college educations who'd some day start a family. We funded those educations (her Bachelor's  and my Master's) on the implied promise of the 20th century that said degrees and our ambition would supply us with careers,  good lives,  and many decades to pay back student loans. Well,  the universe had other plans for me...and by proxy my family. Best we've tried,  with the gracious help from family,  we can't maintain the life we established with me on the sidelines and now requiring regular trips to Baltimore for observation of my PLS. In addition, my illnesses give me hyper-acute senses making me not only in constant pain but also phono and photosensitive. Life around close neighbors literally hurts. I need some more space.

A change of course is gravely necessary. To that end,  we are pairing down,  simplifying, packing up,  and selling to build a quaint off-grid cabin of our design on family property. I can't run at full steam anymore,  but I am going to put as much of my blood and sweat equity (with the help of loving family & friends) into making my girls a mortgage free home with no public utilities, fees for town services we don't receive, et cetera. We need to sell our house after doing a few cosmetic fixes, but a move to a more rustic and peaceful setting is definitely happening.

We are trying to be as self-sufficient as possible but if anyone feels like giving a moving gift we have an Amazon wishlist of items we're likely going to be purchasing for our new homestead. Believe me,  a lot of what we're doing will be DIY Rustic Cabin Chic. If a package arrives with our name on it,  we'll find a use for it. I intend to repurpose my old blog and document every step of the process.  Additionally, my PayPal account is FrederickBGerwig@gmail.com. There was a time that I thought it a failure to ask anything from anyone. Now,  I realize that there are folks who want to help whenever they can.

Until we get a mailbox of our own: 163 Gerwig Dr,  Exchange,  WV 26619 will be the central command center for homestead construction. 

Hi. Check out this list: https://www.amazon.com/registry/wishlist/2CDF6ST9QGKMC/ref=cm_sw_r_an_wl_o_lmaYvb6MATP8J

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/

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

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

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.

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

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.

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.