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.

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10 Responses to Far Guy and Trigeminal Neuralgia

  1. East Side Professor says:

    My guess is you won’t report back… but you really should, you really really really need to tell the doctor that the new medication isn’t helping!

  2. Far Guy says:

    Phone call to neurologist completed. How come I can spell neurologist and not teh?

  3. susan says:

    Has far guy had his prostate levels checked in the past year? remember my brother was doctoring and on medication for his pain from his accident for 2 years, they atributed his peepee problems to that and were so busy trying to adjust his pain level that they just never did a prostrate check, until he saw a new PA who ran a check, yep prostrate cancer, had it out prognosis good. I checked on far guys meds one may make him pee more often one may make him pee less often non slow pee thats sounds more like prostrate.. But I hope not. Good luck today..mayo clinic information on TN informative,,

  4. Far Side of Fifty says:

    Hey Susan, Yes he had a PSA and a whole bunch of other blood tests just last month. They are all fine, well his Cholesterol is up, but they deffered to the Neurologist on upping that med, as Tegretol makes his Zocor less effective than normal, but the Neurologist did not change that med. AND he did call the Neurologists office…I heard him talk to someone anyway, I hope it was the right Doctors Office:)

  5. PrairieWoman says:

    I will be thinking of both of you.

  6. Avatar of farside farside says:

    Thanks Prairie Woman ! One day at a time!

  7. Avatar of abra la mente says:

    I hope they can figure something out that works decent for Far Guy. I have enough issues on days when I deal with migraines, so I can’t imagine having to be medicated daily just to attempt pain reduction. Hoping for the best!

  8. Ann says:

    Hope they (Doc.) check the med levels as they can leave one in a different zone if there to high. I know as I was overmedicated for a year. Didn’t know from one day to the next what I did or said.Or should I say 1 minute to the next. Don’t know how Dave manage to live with me that way. Guess he loves me.

  9. Far Side of Fifty says:

    hey Ann, Yes they check his blood level every so often. This week he is doing a little better. Thanks for the comment!:)

  10. melvin says:

    hello, i am a 52 year old male. i have suffered with TN for over ten years. The most effective medication i take is Trileptal. I take it everyday three times in fact. However, it works for me. Maybe just maybe he can get a sample from the doctor. Trileptal is also called carbamizapine-check spelling.