TN - Trigeminal Neuralgia

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Hello Everyone!

 

My name is Tony, I am 50 years old, I am from Pennsylvania, USA.

 

I was just diagnosed with TN (Trigeminal neuralgia)

 

I got to tell you folks, this thing called TN is a very scary thing!

 

Unlike many people who describe their pain originating at the left or right part of their faces… I get my pain originating from the left side, at the right inner part of my left eye near my nose, going up like feeling like cutting razor blades, and ending up at the middle part of my head. But. All felt in the left of my head only. No pain in the right side at all. And just like most of you describe it, it intensifies like crazy when  touching affected area.    

When I first started to feel the pain symptoms, it really drove me crazy. Lots of things went through my mind… Like: Am I going to die? Do I have a horrible tumor in my brain; do I have just have a few days, weeks, or months to live??  What is wrong with me?? Why am I having such horrible pain?

 

As soon as I started to experience my first pain symptoms,  I called my Doctor to scheduled an appointment right, as soon as possible.  When I got to my Dr’s office, he started by asking me a whole line a questions such: Do you have a bad root canal? Do you have a bad tooth; do you suffer from migraines or frequent headaches?? My answer to all his questions ended on a NO. Then he said, it looks like you have Trigeminal neuralgia. Until that moment, I had no idea what that was?  Never heard of it, could not even pronounce it, if I wanted to.

 

He started to explain the symptoms of TN. Then he started by  asking  me many questions, which would be related in the triggering  of TN pain. Each time he asked me a question, my answer seemed to be YES. At the end of all the questions; he then said, I think you definitely have TN.

 

He told me he had to rule out several other things, so he ordered a blood test, ordered a MRI of the brain, and when the results returned, a few days later… He called me and said that the results didn’t point to anything else. So now he was now sure it was TN.  During this  visit to the my Dr’s office, he prescribed me some pain medicine and 400 mg of Tegretol XR. Which is helping me, but. It does not take away all the pain, I always get it the most,  when I talk and when I brush my teeth, but. Mostly when I eat, eating brings out the biggest episodes of pain imaginable. Really bad!

Every now and then the pain just shows up,  and the it goes away after a few seconds.

 

I learned that when I get a pain episode, if I place pleasure with both hands at the bottom back part of the neck, which is near my shoulders. The pain goes away. Is weird, but. For some reason it works for me. Also if I walk a while, I do not get any pain episodes for a while, exercise seems to have a soothing effect on the pain.   

 

Since my first visit to the Dr’s office and learning that I possible had TN,. I started to read about TN online, and what TN really is? And I was getting more frighten and confused. Things like: Its called the Suicide Disease, because 50-60% of the people diagnosed with it, end up killing themselves. WoW!!! No relieve there!  

    

When I found this site, I was so static, because I can now relate to actual people that suffer from TN, people who share their own experiences and issues as they deal with it.

I can say that now feel more at ease, knowing that “I am not the only one”  dealing with this, and that “there are many more like me” who go about their daily shores struggling with pain, but  with a clearer and more dignified understanding of what we are dealing with. Thank you!  Because. Although even though I am in pain,  I can now relate to others just like me, suffering with TN, and I no longer have to feel afraid about the many things I said, read online about TN.

 

Thank you!

 

 

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9 Replies

  • Posted

    OMG Tony, I know just how you feel!  They put me on the drugs like they do everyone which worked for a few months, then another drug and I hated the way I felt.  I found a surgeon who specializes in TN here and got a surgery where they burn the nerve.  It came back so he did it again with a stronger burn.  This worked.  Have been without pain, just a small numb spot on my face for almost a year now.  Hopefully it will last years or forever! That would be so cool.  But there are several surgeries for TN if you don't like the drugs.  Good luck!
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    • Posted

      Thank you so much Alot, for your kind words of encouragement. It truly does help to hear words of advice from people who have suffered and endured the horrific pains of TN.

       

      I am glad that there is a pot of gold at the end of the rainbow for a lot of the people suffering with TN. 

      I truly wish the best of luck to you, and I hope that your performed procedure, was the correct method applied to you that will end tour suffering for ever.

      My Dr. explained that there are many methods, "just as you described", that have been successful applied in the treating of TN.

      I am hopeful that I can find relief, or an end to this crazy intense symptoms of pain, when I do choose a procedure, I hope I can find a permanent alternative, or  treatment for TN. 

       

      Once Again, Thank you for your kind words of encouragement!

       Wish you all the best, and to all the patients that have successfully treated NT, and are now pain free. Halleluiah!!!!

       

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  • Posted

    Hi Tony. 

    I dont know if you have seen what I have written about a chiropractor.  I went two weeks ago and touch wood fingers cross I'm doing good!  He explained where the Trigemenal nerve comes out of the skull (of which I couldn't begin to tell you the name). I go back a week today for another session of head lifting and working at it. So, it might be worth giving it a go.  Meds don't work after a while which is devastating after the first instance as they take it away instantly! I hope you get some relief. Sue. 

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    • Posted

      Hi Sue,

      To be honest with you,

      This is my first encounter with this site.

      But I am glad I found it, because I  have learned a lot so far from all of you folks in here..

       I got to be frank with all of you...  When I first typed the word Trigeminal Neuralgia online, and I saw it was referred as the "suicide disease". You have to pardon my expression, but. It started to scare the crap out me!

      But. Now that I found this site, and I have read many comments and suggestions posted in here by many of you, let’s just say, that I find it to be better therapy than any medicine I currently take.

      Thank you!

      I will be sure to look up your other postings.

       

      Thanks Again!

       

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    • Posted

      Tony.  You can so understand why it's called that!  I'm 67 and have been having 'face ache' and earache for maybe 18months. And even had problems with my teeth. 

      I have a lot of confidence in my chiropractor and hope to god he can get rid of it.  If push came to shove I would do anything to get rid of it.  Thankfully it has not returned, but I know it could be round the corner. Take care Sues. 

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  • Posted

    Hi Tony91887,

    Unfortunately - welcome to the club. As outrageous as an episode can be, all is at peace again as soon as it ends. No permanent damage to worry about. Just have to get through the event.

    I got it at 47, am now 55, and am from Delaware. You may simply need your Tegretol dose increased. I started at 200. Am now at 800. There are short blips, especially if I miss a pill, but basically it is managed, and I am happy. The generic is carbamezapine.

    You should be under the care of a neurologist.

    People with it in the ear have it worse.There's always something worse. Your case sounds very much like mine. Don't worry. You will manage it too.

    eddie13

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    • Posted

      Hi Eddie,

      Tahnk you for replying to my posting, it is sad to hear that so meny other people share the same condition. But. Even though it sounds "wicked" is good to be able to get words of advice from others that suffer the same symthos as you do, it puts a light at the end of the tunnel.

      Thank you! 

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  • Posted

    Tony and others with NT....

    This is one for the books and believe me it's true. I'm a retired architect from Oregon in USA, will be 70 in a couple months. Initially, was given a medical deferment from the draft board during Vet Man War in '65 while transfering colleges for what the military doctor's discribed as "permanate inner ear damage" and so they said, would only get worse when I was older.  ....hmmm, they were so right while others thought it was my immagination.

    ALL   ..and I do mean ALL doctors I saw, teachers, school administration, family and friends blew it off, what I discribed to them, as they called it, "my immagination."   I've lived with on and off at times unbelievable pain in left temple area, pain to left eye, left side of nose, and left side of jaw since ....I was 15 yrs old. Yup, you read that correctly. About 55 years of agony and it took a friend here in Thailand to get me to the hospital and doctors there to correctly determine the cause.

    Presently and for the past 10 years, I'm an ex-pat in Thailand living as quiet and remote and rural an area as I can live as any loud nose is like a punch in the gut  ...a friend teaching here got me to Bangkok Christian Hospital last November were, after an MRI, they determined I most likely have TN (Trigeminal neuralgia). But doctors in Bangkok, from what I recall them stating, many people here have it in various stagges ..and nothing can be done to treat it. I have no funds for medical treatment even if there was a sure fired treatment. Pain comes and goes  ....some days are great when out of the blue, I'll be strickened with debuilitating pain. 

    I live alone  ...with a Golden Retriever dog I rescued. I live a VERY quiet life now. Frankly, it's a "miracle" I was able to head up several businesses in my career and make it this far in life enduring the pain and stress of it. Yet...  it was a real struggle at times with NO support from a soul!  I think the worse part of this decease is NO ONE believes, understands or wishes to acknowledge what a person goes through with NT. Sympahty is not what one wishes but understanding sure would help. 

    I'm also amazed to read how many persons have NT in various stagges. Heart breaking. Hope those enduring the same can hang in there.

    Blessings, Jonah6

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  • Posted

    I completely agree. I was just diagnosed a few days ago and I was do happy to find this forum.
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