What does the future hold?

1

I've been scanning this site since I joined just a couple of days ago (after having received my diagnosis just about a week ago). My journey to this point includes about six different doctors and two jaw surgeries -- the latest being a total joint replacement of my right TMJ. But after all that, the pain remains -- and actually is getting worse.

It sounds like mine is TN2, and other than medication, what is left for me? I was diagnosed with psoriatic arthritis a couple of years ago. Medication is the only answer for that chronic condition, that also causes pain. But the pain of TN is so much worse, unrelenting, robbing me of who I want to be.

What does the future hold for those of us with TN2? It sounds like many doctors don't want anything to do with us because there's nothing they can "fix." Please someone -- hope?

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The future holds this:

http://www.bodyinmind.org/who-are-we/

This is an Australian research team that studies the effect of teaching the brain new reaction patterns when it is in pain. Apparently, Lorimer Moseley (a physiotherapist and professor at Uni of South Australia) has seen 70ish people with TN, according to a newspaper article aboutTN.

I read one of his case studies, and it had real effect with chronic back pain 10 years ago, so there is real hope. Pain signals to te brain stay pain signals to the brain, nevermind where in the body the pain is.

I am pretty sure continued success will be spread to neuros and specialist physios around the world, and that this will get more research.

A big bunch of us here have TN2/ATN. The routes are hardly ever finished if you just started your journey. There are things like
PNS (peripheral nerve stimulator), several types of non-invasive surgery and a few more invasive ones, and the list of meds is reasonably long.

As I am 35 and had it since 20, I am pretty good at this hope thing. Literally the best for me is to NOT ENCASE MYSELF IN THE TN BUBBLE. Monitor your triggers. Knowing them allows you to do stuff and see people without fear.

I do hard distraction therapy, like video games, see friends, stay away from triggers, and keep doing (somewhat modified versions of) the things I enjoy, including work (very flex hours). If I don't feel like going out, I talk on the phone. Don't let the pain do that robbing. Be angry at it, but don't give in to despair. It really does not help. Really not. And - comfort yourself it could be worse. It could be something stinky, you could've lost senses, it could be terminal, or you could haveTN in a war zone. (Since you have seen 5 docs, guessing it's not to that were you live).

Seeing a psychologist can work wonders. If you are at the end of your rope, please do consider this.

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Hi Niel,

There is always hope. All of Tineline's suggestions are good. I also recommend reading the articles posted here as well as the book, Striking Back, The Handbook for Trigeminal Neuralgia and Facial Pain. It is well worth it's cost. the most important message from the book is that there are multiple avenues for relief and no one needs to live in constant unbearable pain in these modern times.

When I felt like I was at a hopeless point, I went to a psychotherapist; that helped me sort of reset my thinking process, much like Tineline's reference to teaching the brain to react in a different way.

Don't give up. Maybe TN can't be 'fixed', but it can be managed. Keep searching until you find a doctor who is willing to work with you and willing to do a little research. There are many abstracts of research studies in PubMed. Copy the one's that seem to match your symptoms and take them with you to your doctor.

Hoping you feel better soon.

Rissmal