Friday, September 26, 2008

Far Guy and Trigeminal Neuralgia

WELL !! Where to start... Trigeminal Neuralgia is a "rare disorder." It usually effects women..I wonder sometimes if he is getting in touch with his feminine side through this disorder.

He has Atypical TN or Type II TN, which is not the "Normal TN"..but a more rare form of the rare disorder that I HATE. He takes Tegretol everyday, and now Baclofen a new med to boost the effectiveness of the Tegretol. He calls them his "Stupid pills" and yes it does make him a tad stupid..spacey..forgetful..frustrated and confused. He has been on this new mix of meds for over a week now.

Today we must report back to the Neurologist...

He sleeps really soundly now, he sleeps later in the morning. One morning he was not up, I waited and waited, went to the bedroom door and said "Sweetie, time to get up?" NO ANSWER... I moved to the edge of the bed.. "Honey, are you OK?" NO ANSWER.. I moved next to him observing his cute bald head...OH MY.. did he croak?? I touched his shoulder.. NOPE it's warm, so If he is dead I am just in time to save his forgetful butt.. He is breathing.. RELIEF..He is sound asleep and it takes me rubbing his shoulder for awhile to get him to surface from his deep sleep. Should I report this to the Neurologist??

Should I tell the Neurologist about his latest fiasco? He belongs to a Internet Group, but he can never remember his log in name, or his password...so he just creates a new account. He is truly an Internet Multiple Personality..and he is never really sure ..which one he is. Well I give up, I have tried to control all his log ins and passwords but I give up, did I already say that?? I REALLY GIVE UP.

Should I tell the Neurologist that I have to watch him like a Hawk, and I am considering Adult day care for both him and the dog? I am supposed to be a "kept" woman..and now I am the keeper. Did I mention that Far Guy has Adult Attention Deficit Disorder too..?? No wonder his Mother used to tie him to the clothes line with a dog chain when he was little...the woman was a saint.

Should I tell the Neurologist that Far Guy is experiencing some different side effects? One med makes slow pee pee, the other frequent pee pee..so he is a frequent slow goer. Yesterday on the way home from town, he said "Honey, could you speed up a little, I have to go really bad" I almost said "Well hang it out the window if it is that bad." Instead I sped up and took the bumps in the dirt road a little hard..he ran right from the car to the house. Now we live in the "boonies" and If I had to go that bad, I just would have gone outside. But he ran to the house because standing outside next to a tree for FIVE minutes..with me hollering out the window "Are you OK out there?" was just not on his afternoon agenda.

Should I tell the Neurologist that his poor memory is even poorer? He has even forgotten when he cooks supper, he has no recall from one night to the next and I can always convince him that it is his turn...night after night. No. I love not cooking, and I put in my thirty five years..now it is his turn. I probably won't mention this small side effect to the Doctor.

Should I tell the Neurologist that Far Guy is still not pain free? That is the goal, and that is what I will report.

I am not sure what to do about his multiple personalities on his favorite web site..they will just have to figure out which guy he is today. They are adult men, and they know how to contact me, I have not been in that chat room for awhile and I know they read my blog..so good luck guys! I have a hard enough time keeping track of his medications, however things are better since I implemented the Witness Medication Program. I still spell words for him, and fill in the blanks for him when he is visiting one on one with people. I draw the line at phone calls however, I have no idea what the other person is saying, I refuse to be a phone call translator. When the phone is for him, I hide my nose in a book or under a pillow. EXCEPT: I understand that someone who reads my blog everyday has been diagnosed with Trigeminal Neuralgia, and may be going through a hard time. To her I say, you have our phone number...pick up the phone and call us... I will be nice..I PROMISE. I am still an advocate with a hatchet for anyone who has this horrible disorder. WE will listen, Far Guy will listen, he may search for words, but having a friend helps:)

Update on Don the gentleman who showed up on our door step after his diagnosis. Don went to the Mayo Clinic, he has the more manageable form of TN and MAY be in a remission. He is getting along pretty well, he and Far Guy visit on a regular basis.

Newspaper Opinion Update: I have had no luck whatsoever getting my opinion about the increased number of cases of TN in our area published. Our local paper now has a new Editor, so I will try again. We would still like to form a support group.

7 comments:

  1. This sounds like such a horrible disease, and the medication doesn't sound like a treat either. What did he do before he was diagnosed? Maybe I should just go back and read the post, promise you I will, but a little later. Please have patience with me. I really hope that they get the medication figured out soon.

    There was something in the back of my mind, everytime I read your blog, or read your comments on mine. I finally figured it out, I had meant to put you on my blog roll. Now finally I remembered to do it. So there you are! Glad to read your comments and your posts. I really hope that things work out for the two of you.
    Jen

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  2. Hi Muddy Boots Jen, if you check out my archives on my main page.. go to Feb 17 2008..you can read all about it.
    Before he was diagnosed, he had frequent ear aches and toothaches. To the point that one Doctor got mad at him for complaining about a "non existant" earache..So Far Guy has had this for awhile..years.. it became critical about 1 AM Christmas Day...and he has gotten rid of the unbearble pain mostly, but still has pain except at night when he sleeps...:)

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  3. I have never heard of this. I do however understand your frustration with the side effects to the medications. Sometimes I think the side effects are worse than the symptoms. I will keep you both in my prayers. Gosh, that's just awful.

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  4. I just googled this disease and it does sound terrible. Your sense of humor through this is amazing. He's an unlucky man to have this crap, but a very lucky man to have you.

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  5. Thanks for your kind words Milah and flydragon! And Muddy boot dreams!
    We are OK, I blog about Trigeminal Neuralgia occasionally..cause we live it everyday..I keep hoping some celebrity will become a spokesman without actually having the disorder.
    Years ago, people that were aflicted with TN..were just a lost cause, and they usually committed suicide. So it is a SAD disorder.
    Do we struggle, Yes everday, but we are luckier than some people we know.
    Today, I just had to reach the reader that has my phone number, she is shy and having a hard time, her relatives called us and asked has she clled yet? They did not want us to call her, we offered. So I did the best I could to try and reach her..she is not on this site..but the other one that I post on locally. I pray she will call. AND.. I hate the stupid phone.
    Sometimes I blog about TN just to release some of my frustration, and it's nice to know someone is listening! :)

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  6. I wish you lived closer, Hugs to you anyway!

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  7. Thanks Linda! I appreciate the hug!
    Far Guy is one tough dude, we have always found something to laugh about..we share love and humor..cause we are best friends:)

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie