Frustrations of TN

As you all know Far Guy has Trigeminal Neuralgia, if you don’t then let me just say that is is the most horrid disorder that has a mind of it’s own.  Far Guys pain is always present..but then he gets a “spell”of excruciating pain.   Anything can trigger a spell..eating crunchy food, brushing his teeth, someone touching his face, a hug, the wind, and stress.  September has not been a good month, this is his third “spell”.. It began Saturday night when I was gone..the stress of me being gone could have triggered this “spell.”  He helped Jen cook supper for all the gals at the Scrapbook Retreat and was doing just fine until he returned home.  Of course he told no one, when I returned on Sunday he was in a full blown “spell.” He had already taken some of his pain pills, there is not much I can do except take him to the ER which he refused to do or wait to call his Doctors on Monday morning.

Our Neurologist. Dr. P  is on vacation..someone will return my call…we wait and wait.  Far Guy finally called his Primary Care Physician because he is sure his pain meds are too old to be effective. (I called his Pharmacist..they are still good.)  Later that Nurse calls with a new script..I ask if we can increase the dosage to get on top of the pain..she says “NO.”  I said OK tell the Doc that we will be at the ER then..she says well if it is that bad maybe he can give you something else…the something else was a pain patch.

Finally Dr P’s nurse calls me back to find out what the problem is, a different Neuro will return my call, a Dr. F.. I said “No thanks, he and I do not see eye to eye, and he was no help whatsoever a long time ago when we had him.”  ( I am still waiting for him to return a phone call I left for him two years ago.)  She is so sorry..well I am too..there is a Doctor C. that might be able to speak with me today.   An hour later he calls..he doesn’t quite understand the division of power between the Primary Care Physician and the Neuros.( The Primary Care Doctor handles everything but the TN..but he ends up prescribing the pain meds for it.)  He doesn’t like that the Primary Care Physician has ordered a Pain Patch..we can use it, but are to be careful of side effects. He tells us to increase the Tegretol dose.  It always takes a few days for the Tegretol to reach higher levels in your system.  Dr P. says that he always wants to be aware of the dosages and wants us only to increase them if he says it’s ok, he picked a fine week to go on vacation.

Well the excruciating pain left at ten o’clock last night..it lasted 48 hours this time..was it the pain patch that worked or was the spell over?  Far Guy took the patch off in the middle of the night..it was supposed to remain in place for 72 hours..he said it was making him breathe funny, he was dizzy and sweating.

This morning I tried to make an Appointment before our November Appointment with Doctor P.   We are on a waiting list, because they are full.  So I will print out this blog and send it to Dr P..I am sure that he will squeeze us in sometime…or at least call me with further instructions.

I hate being a bitch, I really do, I realize that these Medical people have their jobs to do..but I have to be proactive about the care my husband receives.

I know that Lisa, Shirley and Grace all friends of Far Guys read this blog..they have TN too. Many people out there have TN..no research is being done, no one is doing Jack Squat to cure this disorder…sometimes it seems that no one cares either.  It is often called “The Suicide Disease” ..I wouldn’t have been able to understand how that was possible..but I have seen the pain and felt the helplessness that Far Guy has..only wanting to be free of the pain.

Far Guy just asked me what I was writing about..he also asked me if I have any pretty pictures today..nope.. none today.  I am just thankful that this “spell” is over..it was the worst one in a long time.  Today he will rest,  perhaps we will go for a drive later and look at some pretty leaves turning colors and then we will come home and have a nap:(

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One Response to Frustrations of TN

  1. Lisa Johnson says:

    Connie
    One thing Gene & I have going for us, is spouses that care and love us.
    I think your awesome for being a advocate when it comes to doctors
    Sometimes for me anyway it is easier to just curl up & not deal with anything.
    You need some one to fight for you sometimes. I imagine it is horrible seeing a loved one in pain & not being able to do anything.
    I have never met either one of you, but you have both helped me allot.
    I love your blogs.
    Your both Good People
    Lisa