Healthcare Profession understanding of Atypical Trigeminal Neuralgia

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Hi Stef,

yes i got involved in the featured discussion a few times. I was diagnosed Atypical facial Pain by a neurosurgeon and not ATN (3 years constant burning facial pain). I'm unsure if I have ATN as Im numb down to my shoulder only the left side.

What makes me sick is the thought of the medical community not even having a sub-set for atypical facial on the National Pain Foundation list of definitions of trigeminal and facial pain.

I cant do as much research as you as my condition stops me from reading too much, as others I have seen on here. The fact that there is no scientific evidence for "psychogenic facial pain" to me (someone who is logical and scientific) is understandable. Science cant even measure or read pain, so how are they going to link psychological states to something they cant even measure ?!?!... All these studies could do is amount a percentage of people who have depression and/or clinical psychological problems and also have Atypical Facial Pain. Is this scientific evidence ? ...

personally I think everyone who has ATN or Atypical facial pain experiences some form of psychological issues, but this is due to the ATN !!! not the other way round... before my ATN I was an extremely happy person with a very involved and busy lifestyle... now its the opposite

The definition needs to be updated... even tho it uses the word predominantly I feel sad that doctors may be thinking that i caused my disease/condition :(

thanks stef !!! ur involvement on this site is inspiring !


Stef said:

If you'll notice my "Featured" discussion, Luke, you'll see that you just hit on it! Many people with "Atypical Trigeminal Neuralgia" are mistakenly diagnosed with "Atypical Facial Pain". As for me, I've heard that there are no studies to prove that there is such a thing as "somatiform facial pain', or "psychogenic facial pain", so there exists a school of thought, on our site, in the "Atypical TN" group that it, perhaps, should not even be a valid diagnosis.

Since it would be pain originating in the Trigeminal Nerve, that would make this form of facial pain "Atypical Trigeminal Neuralgia".



Luke said:

WOW !!! on The National Pain Foundation list of definitions of trigeminal and facial pain, last on the list

>>>

Atypical facial pain, (AFP): pain predominantly having a psychological rather than a physiological origin

that makes me sick !

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Scott, this is an old posting of mine, but I just now read your post and may I say, MY THOUGHTS EXACTLY! I am desperate to get back to work and am constantly looking for that magic bullet. It feels like it's becoming my life's quest.

Scott Leary said:

I have lost so much time chasing the silver bullet to cure this condition. I'm willing to go to any lengths to return to work. The pain medication has been of some use but has lossed its effectivness. The symptoms seem to be getting worse. What am I to do???

23

The dismissal of "atypical facial pain" and "complex somatoform pain disorder" as invalid diagnoses is not restricted to our site or the ATN group. The Medical Advisory Board of the TN Association has recently redefined the term as equivalent to "facial pain of obscure origins" and thrown down the gauntlet to challenge its assignment to psychosomatic medicine. I've also offered input along with several practicing psychiatrists, to the consensus committee of the American Psychiatric Association, in their revision efforts for the Diagnostic and Statistical Manual. Many psychiatrists simply don't accept the nonsense about any form of pain being "psychogenic", or in any way caused by emotional conflict.

The world is changing. Some of us would like to change parts of it with a liberal application of pick handles and ridicule for practitioners who have condemned thousands of patients to poor or ineffective care by labeling them "head cases".

Regards,