TN Awareness

Yesterday was Trigeminal Neuralgia Awareness Day.  It is marked by a teal ribbon.

Far Guy has had Trigeminal Neuralgia since Christmas Day 2007.  Six miserable years.  Right now he is taking only one medication.  He weaned himself off of the one that made him feel brain dead. 

 

When you have TN you need a good Neurologist.  Far Guy’s opinion and mine differ on Doctors.  He thinks that his Neurologist doesn’t always listen to his complaints.  I think he listens he just doesn’t have any solutions.

I can tell you that it is no wonder that the suicide rate amongst those with TN is very high.

What we have found what helps, taking your medication on time, NO STRESS (easier said than done for a Type A personality), never leave home without a hat, cap or something hooded.  Even a slight breeze can trigger a bad “attack.”   I don’t care if it is summer or winter. Ceiling fans are  the worst, and places with high ceilings that have air currents….like the grocery store.  Sometimes he must eat softer foods, he never eats anything crunchy.  Sometimes it hurts for him to talk, I can tell when that happens because he talks funny.  Chance is very in tune to him, he could be a TN Service Dog, he doesn’t like the wind either and he knows when it is time to rest.  Chance will take him by the hand and lead him to the couch or to bed.

People with TN look normal, they don’t have a visible sign of the rare disorder.  Unless of course their hats give them away.  They don’t have “headaches” they don’t like to have their faces touched, they don’t like to hug women especially ones with fluffy hair.

In six years we have tried just about everything that we can.  Different medications, different Doctors, different oils, acupuncture, chiropractor and nerve injections.  We even thought about hypnosis, I used to work with a hypnotist years ago, I attempted to contact him and found out he was deceased. Fat bunch of help he is now.

The pain is misfiring nerves out of control…the pain feels like a cattle prod has touched the side of your face/head.  Sometimes many times a day, sometimes a few times a day. Then there is the background pain that never goes away. Far Guy has Atypical Trigeminal Neuralgia, the rare form of the rare disorder. 

There are some things we cannot control.  Weather systems moving in make for a real miserable day. The wind, no one can control that either.

We will attend a support group in the St Cloud area during the winter if the weather cooperates.

I know there are many of you out there with TN that read the blog.  I pray everyday for a cure…I am sure you do too..Shirley and Lisa please know we think of you often:)

 

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:)

Trigeminal Block

As many of you know.  Far Guy has  Atypical Trigeminal Neuralgia.  He has had it since December of 2007.  He lives with pain everyday.  He takes anti seizure medication to help control the pain, without the medication he would not be able to endure the pain. The medications must be taken throughout the day, if he forgets a dose or is ill and cannot keep his meds down he is in terrible pain. Pain medications are useless…nerve pain especially the pain from the Trigeminal Nerve seems to have a mind of it’s own.

In January I asked his Neurologist about new treatments?  Nothing was new. I asked “What do we do when the pain is so bad he cannot take it?” The reply “Call and I will get you set up with a nerve block.”

In March Far Guy had a real bad spell.  During his April appointment I asked the question “When he cannot take the pain anymore and I call you how long will it take to get him in for a Nerve Block?”  The answer was two days to two weeks.  I frowned and shook my head. Far Guy said  “Damn.”  The Doctor suggested that Far Guy try the nerve block now..NOW??  okay!!

Last Monday off we went.  We saw an Anesthesiologist, a Doctor who specializes in pain relief.  Far Guy had an injection of numbing medication and a steroid into his Trigeminal Nerve. (Just below his ear on the right side of his face.) He said “It was pure heaven not to have pain in my face.”

When I first saw him as they wheeled him out of the hospital into the waiting car his face and eye was droopy.  We knew it would be and that it would go away.  What we didn’t know is that he could not blink..so his eye got very dry and sore.  He held his eye closed most of the way home.  Some eye drops and some tape and he was a one eyed wonder. By the next morning his eye was almost normal and his face was back to normal.

The result..so far so good.  His pain is a ZERO!!!!  It may stay that way for six weeks to six months to six years.  (We will take the years please.)  Far Guy is scheduled for another injection in six weeks.

We asked the Anesthesiologist why we were not told about this treatment before?  He said It is becoming more commonly used for the treatment of Atypical Trigeminal Neuralgia. He has had good results with other patients.

One of the reasons we chose this procedure is this.  It does not damage the nerve.  There are other procedures out there, alcohol injections and gamma knives and one treatment that pulverizes the nerve.  ALL procedures that were we warned could make the nerve more angry and cause more pain in the long term.

In all our years of doctoring with TN and Neurologists and Neuro Surgeons this is the FIRST treatment that we have been advised to do. So we did it.

I was not optimistic.  I was expecting that it would work a few hours and then wear off.  After three days I am cautiously optimistic.  Far Guy is just happy to be pain free.  However I still make him wear his hood outside in the wind and I told him he should not eat anything crunchy.   Both the wind and crunchy food have made his pain worse in the past.

For now we will take it one pain free day at a time.  The Anesthesiologist said “You have had a raging forest fire in your face for over four years.  We will hope for good results in calming down that nerve.”

Me too..it has been a long road. If you are inclined to do so..please pray for complete healing and many pain free years.

Last night the boys were out on Bass Lake enjoying a nice evening on the water.  Chance tried out his new life jacket:)

Hocus Pocus

I think I might have met a witch, how do you tell for sure? She had no pointy hat, no warts on her nose, she looked normal. Well as normal as me anyway, blonde, and glasses..she wore a shirt with a peace sign on it. Should that have raised a red flag?

She talked about, bad energy and good energy. With pain being bad energy. She was the speaker at the Trigeminal Neuralgia Support Group meeting last Tuesday night. She recommended one of her "mixtures" as a miracle cure. I asked her what was in her mixture..she could not tell me. I have a list of hundreds of medications and supplements that Far Guy cannot take. If I call her, she can tell me exactly whats in it..yet she could not name even one ingredient. Well I am not a great one to ask for a recipe either..but I do know the basics for most recipes I concoct. Sugar, cocoa and milk equals hot cocoa! A hotdish would have meat, pasta, potatoes, or rice and a vegetable with some kind of sauce. A few recipes does not make me a Chef..only a cook.

She recommended that we come in for the Ionic Foot Baths, to rid our bodies of heavy metals. When all the metals were gone, she would give us a special potion to give us back the metals we need. She recommended that everyone go to a special Dentist and have all the fillings removed from our teeth.

She recommended touch point acupuncture, she demonstrated this on a likely victim. She had a shiny silver tool, that kind of looked like a tire gauge, she rubbed it along the lady's finger and went into a trance. By "trance " I mean..special words that obviously must accompany the procedure for it to work. She finally found what she was looking for in the lady's finger, a spot of extreme pain and tapped it with a sharp point at the other end of her fancy tool. Then she took out a little band-aid type thing with a metal point on it and put it precisely on that spot. She kept asking the lady where else she hurt besides her head, well if you ask an elderly woman enough times where else she hurts ..eventually she will come up with another complaint. Well wouldn't you know..that one was addressed also. She said our bodies are all out of whack. That our bodies should be a perfect PH of 7. That we are most likely too acidic. We would benefit from full body massages also, well here is my take on that sort of pampering.

Well about this time, I am thinking..someone is way out of whack..and it ain't me. I do not know what other types of services are available at her place of business..I do not know if she is part of the new age movement. or if she is a witch. What do you think? I have met many weirdos in my life, but never one like this before:)

Mission Accomplished

"We classify ourselves into vocations, each of which either wields some particular tool, or sells it, or repairs it, or sharpens it, or dispenses advice on how to do so; by such divisions of labor we avoid responsibility for the misuse of any tool save our own. but there is one vocation--Philosophy --which knows that all men, by what they think about and wish for, in effect wield all tools. It knows that men thus determine, by their manner of thinking and wishing, whether it is worth while to wield any." ....Aldo Leopold

The Support Group Meeting.. we were on time. We divided and conquered, me at the doors and Far Guy in the meeting room. Everyone was welcomed, 9 people with TN out of a possible 21..it would have been asking way to much for the two living out of the area to come, and the five that are deceased were excused too! Yes, the numbers are at 28.. the numbers grow everyday. I moderated a round table discussion, encouraging them to share. The stories are all sadly familiar. The seven women out numbered the two men present. Everyone has a different doctor. They are angry, frustrated and looking for answers. The five spouses and one grandmother that attended showed such compassion and strength for their loved ones with TN. Two gals had the brain surgery..called an MVD..they are pleased to be rid of the pain..they shared that before the surgery they were at their wits end.. and could not live with the pain any longer..one is still on a very high dose of medications, the other on a very low dose. Both feel some numbness in their face and head. But they shared the fact that they had their lives back. Other people shared that their Doctors did not advise surgery because the end result could be worse than the pain they are feeling now.

I shared with them the book "Striking Back" a bible of sorts for TN..written by a Doctor that has TN. I offered them support..they all have our phone number and some even wanted our email ..which I gladly gave them. I offered them the option of meeting again. They agreed to meet again next month. They wanted me as the lead loud mouth to continue as their leader. I politely declined. That news was not well received.

I cannot emotionally carry enough tools to help them all. I can barely carry enough tools to help Far Guy. I feel badly about their situations...especially the young Mom who is having trouble being diagnosed, and the elderly lady who might have it..apparently her Doctor feels she does because she is on the same medication as the others but without any recommendations to up the dose..so she still suffers..undiagnosed..we told this elderly couple to go back to their Doctor... soon.

I am confident that I gave them enough tools to go to work on their own, as a group they can support each other, they can reach out to each other. They can help each other, education and information shared is a beginning.

Do I feel wonderful? NO. Am I pleased ..not exactly. If they pick up the tools and get to work I will be. We just have to wait and see. I did the best I could, I have accomplished my goal.. I set out to raise public awareness and form a support group..I did, it was like pulling teeth there for awhile..but I accomplished my mission.

I would like to thank all of my readers that have been following this mission from it's beginning, with out your comments and support I would not have made it through. Your supportive comments yesterday were just what I needed to forge on through a difficult day. Old lady from Minnesota giving her readers a standing ovation:)