Atypical trigeminal neuralgia treatment

[San366]

I'm a 57-year-old female.  I've been having constant nerve-like pain in my right lower jaw/cheek area for two years, with very occasional tingling in my right lower lip.  On occasion, toward the end of the day, I may also have pain on the upper and lower left sides.  I've seen many doctors; the consensus seems to be atypical trigeminal neuralgia, but a couple of them think there's still possibility of myofascial disorder or TMJ (my films are normal, I have no problems opening or moving my jaw).  I have a custom dental splint, which is not helpful.  The neurologist says my brain MRI is normal.

No OTC or narcotic pain meds or SOMA help the pain.  I tried a 3-day trial of Tegretol last year and could not continue it because of the god-awful spaced-out feeling (there was no pain relief at the time).  The only thing that helps the pain and gets me through the day is chewing mint gum (I know that's harmful if I have TMJ, but chewing gum and sleeping are absolutley the the only times when I'm pain-free).

An oral surgeon did a myofascial release injection, with no help.  An ENT gave me a steroid injection inside my cheek last week; I believe it may have brought the pain down a notch for a day or so, but it came back with a vengeance.  

I have taken Ambien/zolpidem for 5 years due to chronic insomnia.  I also take atenolol, vitamin supplements, and omeprazole, and one baby aspirin a day.

I had a gastric bypass five years ago, and a face/neck lift four years ago.  I have degenerative disk disease in my lower cervical spine, the disks above it are all "perfect" according to my orthopedist, who did a recent film.

The pain has taken over my life and I'm barely able to do my job.  I do not want to file for social security disability, but it may come down to that if I can't get a handle on this.  Any advice?

[tnsux]

Hello...I too have been suffering from tn1/tn1 for about 5 years now..I've been on all the hard core pain,nerve,anxiety,steroids,blockers, topicals, sleep meds, and the list goes on..I finally got fed up with getting nowhere with docs in my state so my hubs and I bolted to Colorado seeking help...so far have been able to drop 3 scripts...the only ones left now are managing decently..could be better but has been worse...I feel much better having a choice in my health...

[San366]

I've heard from many people who find the same relief with chewing gum and sleep.  I chew the gum as little as possible, since my face hurts even more once I actually quit chewing.  Unfortunately, I have made no progress with a hard-and-fast diagnosis or other treatment.  It's been over five years now since I've had a pain-free moment and I'm totally addicted to Ambien so I can sleep (including a nap during the day for a brief pain escape).  I've given up on doctors. Meditation and breathing exercises as well as other pleasant distractions are helpful in bringing down the degree of pain (most excruciating at mid-day).  I know my solution will come from keeping in touch with fellow pain peeps, so I appreciate the contacts I make, such as yours.  I hope you find relief soon.  If I ever find anything that works, I'll be posting it loud and clear on the net!  LOL.

[Telos_]

Hello,
Did they ever find the cause of your pain?  I get the same relief (chewing gum and pain) with a pain behind my left eye that can go to the my cheek and mouth (seems like TN).  MDs have said that it is not a classic trigeminal Neuralgia and MRI was fine.  But, oddly chewing gum and sleep are the two things that relief the chronic pain the most (also generic Klonipin can help a little).  
MRI of pituitary showed a 1-2 mm pars intermedia cyst.

Thanks for your share.
Marc

[nancy99n]

My suggestion would be to find a teaching hospital with a "Facial Pain" center.  These doctors see Trigeminal Neuralgia and other facial pain disorders on a daily basis.  They would probably be able to help you.

I also tried Tegretol and it made me a zombie, also gabapentin -- neither one helped with the pain.  I finally ended up on Trileptal and after many dosage increases, got to the point where the pain was controlled.  I was able to work by taking NoDoz with my morning and midday dosages (at the doctor's suggestion) to counteract any drowsiness.

It's very important to find a doctor that specializes in facial pain.  

I hope you find your pain solution.