Tuesday, October 8, 2013

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. 

 

Tn Teal Ribbon

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:)

  Blog Signature

18 comments:

  1. I pray for a cure, too. Gene had TN about a year by the time I began blogging. I love the ribbon/slogan above...never give up hope.
    Love to you guys.

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  2. I pray they find a cure. As a chronic pain suffer I kind of know what Far Guy goes through. Never give up hope or trying to find something that helps.

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  3. I had never heard of the disorder before I learned of it on your blog. It sounds just awful. I'm so glad that Far Guy has you and Chance to help him cope. What a strange illness! And it never goes away or gets better? Mercy!

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  4. This all is new to me as well. It's certainly evident Far Guy is a very brave man.....

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  5. Hi:
    I am the Shirley that you mentioned along with Lisa. Thank you for thinking of us!
    I still have "Anesthesia Dolorosa" Gene - you remember I had surgery (Balloon Compression) that took away the lightning like pains but left me with perpetual sort of numbness of the right side of my face and scalp. There is constant burning, itching, a sort of spasm like grip that never goes away day or night; It is not pain but ever present and very distracting There is no such thing as ignoring it as you can with some maladies. MY TN side eye is affected and waters and burns all the time. I have better vision in that eye than the other one says the eye doctor. So the TN has not affected my vision thank goodness. It just FEELS like it is affected if you know what I mean and is very distracting. I have not seen a neurologist about this because am afraid that things could be made worse with any further "treatment" but maybe one of these days I will see one. So Gene you know how I feel for and with you. Here's hoping that some day there will be some way of treating TN.

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  6. Forgot to say I usually sign off with Shirley H.!

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  7. I never heard of TN before. It sounds just awful. I will hope for a cure also.

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  8. I too have been educated about that condition from your blog. Thinking of Gene and all others who suffer from it. Hope some sort of cure is found soon.

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  9. I learned something today as I have never heard of TN. It is wonderful that Chance recognizes the signs and looks after Gene. I pray that there will be a cure for this disease. It sounds awful.

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  10. I am very happy that this blog has educated more people about Trigeminal Neuralgia. It is not all that rare but many have not heard about it and some of these are doctors and dentists. Thanks for spreading the word.
    Shirley H.

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  11. One of the best features of blogs and the Internet is that we learn about rare conditions and can communicate with others who are going through the same thing. It helps to know we are not alone.
    I have a grandson with Ehrler's-Danslow syndrome, another rare condition. If we all help each other, maybe someone will come up with more effective treatment for these disorders.

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  12. My mom had this and Dilantin helped her a lot.

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  13. Thanks for sharing the perspective of someone on the 'other side'...of the TN fence, that is. I too have the more rare form of the rare disorder - though my ATN pains were caused by the surgeries meant to fix my condition. And they wonder why I don't like the idea of another knife in my head!
    I've done the round of meds - hated the side effects. Had the mvd(x2) and a rhyzotomy - all failed. High does of lyrica and I take T3s or marijuana. Tried everything else to no avail. At least I can pretend to take part in things now... Lots of 'parenting from the couch'.
    Thanks for sharing this story!!

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  14. You give an excellent description of TN. It sounds absolutely miserable. I wonder what percentage of people have it. There are many things that we know what they are but not how to treat them. Too many medications make you feel worse for other reasons.

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  15. I am so glad you wrote this, Far Side. Lately, I've been wondering how your Far Guy was doing with TN. I know this is a challenging condition to face in general, but ever since you've introduced us to Far Guy, it's an entirely different thing to think of a person we know (well, online) having to go through all of this. From time to time, I think of him, pray for him, and wonder how things are going for him. Since you haven't mentioned much about it lately, I was hoping he was having better days. This sounds like something you shouldn't wish on your worst enemy. Wishing for a cure, or at least a manageable treatment plan to hold those symptoms at bay...

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  16. I was totally UNaware of TN. It sounds awful!
    Just a thought from a person living in a pot state - have you tried medical marijuana?

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  17. Ever since I started following your blog I have been praying for Far Guy...I started about the time you found out...like you I pray for a cure!

    Linda
    http://coloradofarmlife.wordpress.com
    http://deltacountyhistoricalsociety.wordpress.com

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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