Monday 19 August 2013

Trigeminal Neuralgia : 20 People, 20 Words

There are several books about Trigeminal Neuralgia. They give the facts.

But not many will talk about the fear, the anguish and the isolation that TN brings. They probably don't talk about how incapacitating or exhausting TN is. But these are also important facts. And these facts can only come from TN sufferers or caregivers.

For this blog post, we asked twenty people to write twenty words (approximately) about their experience of Trigeminal Neuralgia.







There is only one way to get awareness….we have to make it happen. Please talk about TN. Write about it. Share this blog and other blogs about TN. Share the posts made on TN awareness groups and pages (including our own on Facebook). 

The only way to ever End Trigeminal Neuralgia is by creating awareness…….so please help us make that happen.

We are always interested in your comments. Why not leave a comment with your own 20 words about Trigeminal Neuralgia?

14 comments:

  1. Excellent job! Almost cried as I was reading and I already KNOW how much we suffer from this beast. I also know how difficult it is for caregivers,family, and friends to watch us go through this.

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  2. I am a 15 year veteran of TN Gamma Knife has given me 6 years of peace I PEACE to you all.

    ReplyDelete
    Replies
    1. Hi there, thank you so much for taking the time to comment here.
      So nice to hear good news. I hope you continue to have pain fee days.

      Delete
  3. I have tn now for 7 yrs. Just recently it has become unbearable. I just saw some videos for a TN laser center in South Carolina. Anyone know about this place?

    Thanks,
    Sheila

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    Replies
    1. I am sorry for the delay.
      I haven't heard of this place. I hope your pain has calmed down a bit.

      Delete
  4. Newly diagnosed, one week today....very frightened about what is ahead of me...looking for info,support groups, comments anything really to know I am not alone.

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    Replies
    1. I apologise for not seeing this sooner.

      If you haven't already, please look us up on Facebook at www.facebook.com/endTrigeminalNeuralgia. There are many sufferers out there, and you will be amongst friends who will help and support you.

      Again, apologies for the delay.

      Delete
  5. I hv tn since 21 years. It is a journey through hell. Take each day at a time - try yoga, meditation, music, keep plants, pets, anything that you love and my fellow sufferers cheer up, hv courage dont give up hope- you will win in the end

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    Replies
    1. Thank you for taking the time to write in here.
      It certainly is a journey through hell, but we can win.
      Your words will bring encouragement to others.

      Delete
  6. I have tn for 6 years now. Is the most lonely disease as people don't understand, sometimes I feel that they nearly think I making it up. Only for family and a few good friends I would have given up long ago. I am now experiencing tn in the other side of my face. One side was bad enough but bilateral tn.. the pain has been unbearable. I know I have to be strong but is just hard sometimes. .

    ReplyDelete
    Replies
    1. Hi there,
      It is a very lonely disease. People don't understand because they don't have enough knowledge. This is what we are trying to do at End Trigeminal Neuralgia.
      We are doing a lot over at our Facebook page, to try to create awareness. www.facebook.com/endTrigeminalNeuralgia
      (You do not need to be a Facebook member to use the awareness page. Anything we have there can be shared or downloaded to help you)

      Delete
  7. To see these words from you fellow sufferers is mind blowing as you literally took my feelings and put them in words. I have a hard time expressing TN to others. Thank you for doing it for me. Keep fighting, coping, praying, wondering and you know.

    Samantha
    Moyock, NC. 3 years in pain from TN ( due to root canal )

    ReplyDelete
    Replies
    1. Thank you for reading, Samantha.
      Hope your pain is low

      Delete

Thank you for your comments.