Atypical Facial Pain

[dzylizz]

I have been diagnosed with Atypical Facial Pain. I have had severe pain and numbness on the right side of my face for almost 4 years now.  They have ruled out Trigeminal Neuralgia because of the numbness and ruled out Bell's Palsy because of the pain. I have had CT scans of my sinues and 5 different MRI's with contrast and w/o.  All came up clear. They have ruled out MS. I even had a lumbar puncture to test what I'm not sure (but neurologist at the time said I needed to).  I had a bone scan recently (just in case it wasn't something in my bones, the only thing they found out with that is that I have arthritis) I have had more blood taken for test than I would have donated in a year's time.  I have even been tested for Lyme disease.  I have been on 5 different types of pain medication including Tegretol (which I found out I am allergic to) and Lyrica. The only thing that has helped in the past year has been Nortriptyline, but every few months I have to up the dose because the pain starts coming back.  The numbness is alway there, but the pain comes and goes, it is sometimes triggered by cold and most definitely by stress. I have seen 4 different neurologist. I had tried other message boards to see if I am the only person out there with these problems with no responses.
Can ANYBODY help me???

[bojack1962]

I too have had these symptoms for about 7 years. I was diagnosed with trigeminal neuralgia and had microvascular decompression and gamma knife surgery but neither worked. I have also been on every medications and they didn't work. They changed the diagnosis to Atypical facial pain and I was told that both surgeries were unnecessary (I had the last procedure about 1 1/2 year ago). About 2 months ago I first felt the numbness and it is steadily getting worse. The pain is also increasing and it seems that I no-longer have any relief. I am trying to remain positive but it's getting more and more discouraged.     Fatima

[salea]

Forgot to mention my post was on the same day as you (2/19) 12:13.

[salea]

I know exactly what you're going through (thankfully, you worded it better than I).  The symptoms you posted are the same as mine.
My symptoms started about 4 years ago.  Since then, I was diagnosised with Chronic Sinusitis, when treatment didn't work (multiple times), diagnosised with Migraines.  Of course, no change.
I went to a Neurologist who diagnosised Hemicrania Continua (you might want to google this).  Symptoms matched up, but treatment (Indomethicin and Neurotin). failed.
At this point, my Neurologist has set me up with a Pain Clinic.
Are there certain triggers that set you off (mine is hormnes & weather changes).
If you hear of anything that may help , or even a diagnosis, please let me know.
Good Luck and hang in there!!!