Friday, 29 August 2014

Trigeminal Neuralgia Support

Trigeminal Neuralgia is an absolute nightmare. It has invaded every single part of my life, and it continuing to chip away at my soul. 

I am in pain constantly, 24/7 without a break. I never get a full night sleep, and it's even taking control of my dreams. I can't remember what life was like before TN hit. It's a long distant memory, and rather than it being my own recollection, it's like I have read a book about someone else. 

I am not the only one. 

That thought is frightening and comforting at the same time. I hate the thoughts of another person having to deal with this condition, but knowing that I am not alone helps. It's a paradox. 

There are some fabulous support groups out there. The people in them know exactly how I feel, they feel it too. Some people have suffered longer and they are in more pain than I am, and for my sake and theirs, there needs to be a cure. Sometimes surgeries can help, but that option is not available to every TN sufferer. Sometimes these surgeries make matters worse. 

The International Trigeminal Neuralgia Awareness Day is approaching quickly (Oct 7th) and we need to get the word out. Awareness not only helps regarding a cure, but it will help people understand. 

Anyone living with a so called "invisible illness" has the same story to tell. People find it hard to understand and there are even people that don't believe us.

I am a firm believer that if someone doesn't add anything to your life, but leeches every bit of joy and happiness from it, these people need to be cut off. Cut them off at the roots. Life is too damn hard with such people in it. It doesn't matter if these people have been your friend since childhood, cut them off. 

If you have Trigeminal Neuralgia, Atypical Trigeminal Neuralgia, any other facial pain condition there are amazing caring people out there that always have a kind word, a reassuring presence and some good advice when things are hard. I have reached out, and I consider myself lucky because my family are a great support. 

Don't suffer alone, and don't suffer in silence. If the pain gets too much, go to the closest A&E/ER Department, but go with a thick skin. Many of the doctors and nurses haven't got a clue what TN is, so take some time to explain it to them if you can. I have a sheet of paper in my purse that explains briefly what Trigeminal Neuralgia is, what medications I am on, my GP, my Neurologist, and my next of kin. Do not let them label TN as a "headache," it happened to me before and it has happened to many others.

Another thing needs to be said. Only take the medication that is prescribed.  Don't take more than the stated dose, and don't take anyone else's pills. If the meds mess with your memory, a notebook is handy to keep close, even post-it notes are worth a shot. The TN community have lost a few people to accidental overdoses over the past couple of months, and it's a trend that needs to STOP.

Despite the pain, there is always hope. How far has society come in the past five years alone??There is more technology in your smartphone than in the Apollo 11 spacecraft that landed on the moon.. so there is hope for a cure. We need to speak out, inform people and educate those around us about facial pain. 

Contact me if you want some information about support groups, I will be happy to help. 


  1. Hi, thanks for this - a bit of background! My wife has been suffering with TM for about a year after a botched operation to remove a troublesome titanium plate from her face. Her jaw didn't grow properly and she had to have a double osteotomy about 10 years ago having her jaws broken in about 8 places and having 20+ titanium plates put into her face. She also had hip bone used to create cheek bones. It was an 8 hour operation and she was left with nerve damage however it was loss of feeling in parts of her face not pain. Then one of her plates starting poking through her face and she had to have it removed. They cocked it up royally - had to cut through bone and her sinus and apparently damaged her trigeminal nerve and here we are.

    Obviously it has put stress on our relationship and sometimes it's hard to know what to do, or what to say for the best. Doctors don't know much and the pain clinic she attends is useless. She is on a cocktail of medication and is just getting by. Her memory is terrible and she says her brain has turned to mush. She won't really talk about it to anyone else as she doesn't want people to feel sorry for her. I want to do what I can to support her as it's hard when you don't really know.

    So I found you on Twitter and then came along to your blog so thanks and hopefully I can learn something to support my wife a little better.


    1. Thank you for the comment. I cannot access your profile, so I have sent you some messages on twitter. (direct msgs NOT tweets)

      Sarah H