Fall is visiting and a TN Update

Fall came a visiting yesterday..and is going to stay for a long weekend.  40 F or 4 C.  The snow is melting:) 

Forty degrees in December is something to celebrate in Minnesota.  I sat out in the yard in my shirt sleeves with no coat.

We had a busy day yesterday.  We left before daylight for a long drive.  To a Trigeminal Neuralgia Support Group Meeting.  Far Guy felt like he learned some things and his feelings toward Doctors, medication and the frustrations of TN were validated.  I kept telling him he was not nuts and I was sure that other people shared his feelings..and they do.

No one within the group has had the Steroid Injections in their face..nor had they heard of the procedure.  They made lots of painful looking faces when Far Guy described the procedure. The long needle and the pain he endures during the procedure.

Far Guy’s last injection was on September 20 and it did nothing.  Or at least that is what Far Guy says.  I think it did something, it kept the painful zaps at bay but not the everyday pain.  He is scheduled for another injection soon…he has had it with the zaps..which lately have brought him to his knees and unable to speak.. it is time.  Perhaps this is the injection that will keep the pain at bay for six months or more..other people that we know are pain free..so why not him? 

The guest speaker at the meeting was a Neurologist, she seemed to have different opinions than our Neurologist.  She refers most of her patients to the Mayo Clinic..and most end up having some kind of “procedure” which may take the pain away for awhile..but many report that their pain is back.  One lady there said that she has been pain free since starting her one tablet of Tegretol a day and that the rest of us were scaring her.  One poor fellow is bilateral..he has TN on both sides of his face and has had it for 16 years. Another fellow had a “procedure” at U of MN that made half of his face numb..so he cannot tell if he is drooling or his nose in running. He seemed happy to be numb..he was the only one who saw the same Doctor H. that we saw at the University of Minnesota several years ago..the Dr. H. that told us “Anything we do to you would probably make you worse.” 

And so it goes.  We were happy that the weather cooperated to make it an easy traveling day.  After the meeting Far Guy dropped me off at Menards and waited for me whilst I ran in and purchased a gift that our local Menards was out of.  Five minutes..in and out which included waiting in line..speed shopping at it’s best. Twenty- three shopping days left..one package down and who knows how many to go:)

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.