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Living With Facial Pain

Pain desensitizing treatment - it works!

Hi everyone.

I just felt that I need to post this to the site although I’m no longer active here.

I have had all branches bilateral TN and ATN for a total of 19 years, and was gaining tolerance to opioids (which I was on daily), so I decided to hold no bars and go for an approach that has been gaining momentum in research in the later years.

I read this book Explain Pain by one of the world’s leading pain experts, Lorimer Moseley, and David Butler. Suffice it to say it changed everything.

Their approach is basically explaining to you what pain actually is, and that your brain can be relearnt how to not send pain signals. Basically, you have to expose yourself to the pain in measured quantities, to increase your threshold. I have had constant pain for the last 5 years and after 1,5 months my brain went from a constant 5 to a constant 0. Yes, really.

It is hard work, but it is free of all side effects. I am off the opiods, off Tegretol, and I’m working on all my triggers now that the constant pain is switched off. I’ve been doing this since March, and the results are incredible. I could not use any screen at all, and now I can play a game on my phone for 20+ minutes, which was not something I considered even attempting in February. I already tolerate pressure, sound and drafts/AC much better. It’s going well on all fronts, and I only have to take a tapentadol about once a week.

If you want to learn more, you can get more information on their site:

They also have and outreach and publishing site where you can buy their books. http://www.noigroup.com

The medical research is solid. They also have a workbook companion to Explain Pain, called the Protectometer (also an ipad app). This workbook takes you trhough the actual steps of exposing yourself to pain. Although the researchers focus on more common forms of pain like back pain, I can testify that it helps TN too. It is all about the brain readjusting to not sending the “danger signal” (pain) when it is not warranted.

Lorimer Moseley has a profile page here: https://people.unisa.edu.au/Lorimer.Moseley

He also has an excellent, short TEDx here, which is a good place to start:

Just want to round off that it is hard work, and painful, and you should probably do this with a pain doctor and/or psychologist. But - if you are up for it, you can actually retrain your brain. You just need to know that you will come out the other side - if not healed, then substantially better.

I hope his has helped you! I am not on this forum anymore, but you should find all the necessary information on these sites+in discussion with your doctor.

1 Like

Hi Tineline, thanks so much for sharing this information, it is really interesting! Hopefully it can be helpful for someone who is really suffering. Thankfully I am not quite there yet, and still managing okay. Best wishes on your continued success!
btw, that guy is really funny!

Tineline,

Thank you so much for posting about this. Did you use the Graded Motor Imagery at all? Wondering about how that may apply to facial pain.

Very intriguing indeed. I also have constant pain, so I am definitely interested in more information if you see this post.

Thanks.

Tineline, I am so pleased at your outcome from trying the Body in Mind website. If you visit fpa.org-support and click on “Blog”, you will find an article written by Melissa Anchan and highlighted by Jennie LeCompte. Jennie told of her experiences managing pain with neuroplasticity. Your story so reminded me of Jennie’s experience.

My daughter Emily was one of the founding members of FPA’s Young Patient’s Committee. Unfortunately, her medication regime ended her life at age 25. Em moved out of my house and into the farmhouse of her dreams on December 11, 2012. She died the next from the toxicity of prescription medications she did not take that day. It is my fervent hope that no other parent need suffer the loss that I experienced then and whch continues to influence every breath I draw. It is my hope that every neuralgian will have a chance to live her dreams. I know that what you have done is difficult, but I am so pleased with the results you have obtained. Make me proud. Keep succeeding. Conquer your pain so that you can live your dreams. We are the stuff our dreams are made on.

Thank you for posting this - hugely interesting. I can’t believe that I’ve reached the ancient age of 62 and not really understood how pain works. It’s a great TED talk - I wish it had been longer. I’ve got a few pain issues so I am definitely looking into this. Thanks again - so seldom we see anything hopeful that doesn’t involve major surgery and/or strong medication!

Hi Janet, very sorry indeed to hear about your daughter’s death. Would you mind if I asked you a question about it; please don’t bother to reply if it’s too painful for you. You say that her medication regime ended her life then say “Em …… died the next from the toxicity of prescription medications she did not take that day.” Can I ask what happened - did she die because she didn’t take her medication? If so, what was it, exactly, that caused that? I know, from personal experience and that of many others, that the meds we take are strong and often come with many side effects but I’ve never heard of anything like this before. As I said earlier, please don’t cause yourself any distress if you’d rather not talk about it.

I attempted to find the blog post you mentioned, but after several searches I could not locate it. One of my searches did yield this video though: https://vimeo.com/192471523

Posting here in case it may be useful for others.

I’m so sad to hear about your daughter, Emily passing away. As you said hopefully new and better approaches to pain are coming so that no parent needs to suffer another loss like yours.

Well that is ONE person heard from. It may be good and I do hope and pray that it works . I am careful about things that work so well. as mind over matter but I don’t feel very secure in reacting to paying out money until I am comfortable that its true. I guess the old adage If it sounds to good to be true it probably isn’t. And the bible even says a fool and his money is soon parted. Thank twice act once.
Wheels 4 legs said all that?