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.