Living with suicide disease

The Facial Pain AssociationWe just returned from attending the 9th annual national conference of the Trigeminal Neuralgia Association.
This years conference was held in sunny San Diego, Ca.

I cannot describe to you the benefit we get from gathering with others who have known Trigeminal Neuralgia and other face pain syndromes. This horrific pain is described as the worst pain known to mankind.

Because it is not well known; resources for coping and medical care are often difficult to come by. Yet the Trigeminal Neualgia Association brings together experts in the field from across the world. Three days of learning that we are not alone, that there are surgical and medical treatments that can sometimes stop the pain and at least lesson it’s severity.

We network with others who are still struggling with TN and other face pain. Seriously I have made friends for life by attending the last 3 National conferences. My husband has had the rare opportunity to connect with other support persons who know this pain by association.

All of us are validated in our fears. We are encouraged by seeing others continue trying to lead productive lives. And we come away with greater understanding of our disease and ways of coping.

I am a fortunate one who found relief in brain surgery (microvascular decompression) to stop my pain in 2006. Not everyone who has TN is a candidate for this surgery. Others find pain relief for some time and then the monster returns. My most recent post about my experience with TN is here: title="It began as an itch in my ear" target="_blank">

Many of the Neuro Surgeon’s at the conference mentioned recurrent pain years after MVD. For a multitude of reasons that I will describe later. Yet meeting people who have been pain free for 12 + 16 years encouraged my hope.

But I will never forget!

This year was special because the conference concluded just one day before The 1st Annual Worldwide Trigeminal
Neuralgia Awareness Day.

And during this conference I became aware of a co group of the TNA which is working to actually find a CURE for TN. This foundation is likely the most exciting thing I was made aware of. Please check out The Facial Pain Research Foundation

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