Atypical Face Pain and Introducing myself

General General TN & GPN (Old Site)
1

Gosh I think I could write a book on this Atypical Face Pain that I have been diagnosed with, but I would like to compare symptoms because I've had several diagnosis through the years from TMJ, Migraines, Myofascial Pain Disorder to Atypical Pain.

I am 42 years old and my facial pain started about 5 years ago, I remember at the time I had a bad cold and sinus infection, all of my upper teeth hurt, which makes sense. The cold and sinus infection went away, but I was left with a constant throbbing, burning sensation on one side of my face, when I say face, for me it affects my teeth/gums only on the right hand side, both upper and lower gums and also bottom anterior teeth/gums. I've never felt any pain on my facial skin or anywhere else, it's always, teeth and gums.

I've been to a TMJ specialist who put me in orthodontic braces saying my bite was off, so did that for 2 years, didn't solve anything. I know I don't grind because I have wear a device at night that tells me how many times I clenched during the night and it is very minimal. The pain is constant, I wake up with it, usually at a lower level, that increases as the day goes on and it's always worse at night. It is also worse in times of stress. I have never had the lightening shocks as is typically described with true TN. My current neurologist, whom I think it probably not well versed in treating Atypical Face pain has never been able to take the pain away with meds, I've tried many, but he is always reluctant to increase dosages.

I react very badly to medication and he doesn't want to combine meds either, but I think that's maybe what I need. Right now I am taking clonazepam at night to help me fall asleep and stay asleep. During the day when it gets really bad, I'll take some tylenol or ibuprofen to dull the pain, but it never goes away. I really don't know where to go from here. I think I need a combination of medications that will keep side effects at a minimal level and help with the pain. I am not expecting the pain to completely go away as I have accepted my pain, but I sure wouldn't mind it to be at a lower level daily without having all of the medication side effects of short term memory loss, weight gain, dry mouth etc, the list goes on.

I live in New Hampshire, but can also travel to Massachusetts to see a specialist. If you can know a doctor who specializes in Atypical Face pain, please let me know.

Thank you

2

Not sure what meds you have been on, I do have the electrical stabs, but like you the pain is always on my right side and feels like teeth and gums. Gabapentin helps somewhat control the stabs, but I generally still have a dull, constant burn. I too do not handle meds well, but find the Gabapentin makes things liveable most of the time. Wish you the best in finding answers, keep at it, we have to advocate for ourselves as you know and please keep us informed, we care.

3

I have been on a bunch of meds, Topamax, Amitryptiline, nortryptiline, neurontin, gabitril. The amitriptyline worked fairly well, but the weight gain was aweful even at a low dose 20mg and the neurontin was also good, but even at a low, I had no short term memory. It was so bad, on 600mg/day, I couldn't remember names, what I had done the day before, I could only live in the moment. I'm going to call my neurologist and see if we can try Trazodone along with the klonopin at night. I've read some studies where Trazodone worked as well as amitryptiline, but without the weight gain side effects.

4

Have you not tried Tegretol? I have bilateral ATN, and Tegretol did work incredibly well for the pain, but I developed an allergy within 3weeks, and had to switch to neurontin. I take 600 mgs 4x a day, and while it takes the edge off, it never makes the pain go away.
Although I live in Georgia, I see Dr. Jeffrey Brown in NY . He gave me my diagnosis of bilateral ATN in November, 2012, and did the MVD surgery on my right side in January 2013. While it was successful in stopping the shocking TN 1 pains, the chronic burning, boring pain of ATN persisted. I have had this type of pain intermittently for close to 10 years, although I did not seek treatment for it since I attributed it to my Chiari Malformation. The long duration of the damage to my nerve definitley affected the outcome of the procedure. After consulting with Dr. brown in July, I decide to have a peripheral nerve stimulator for pain control implanted on August 21, and am happy to report it is working very well! I am pain free more often than not.
Dr.Brown is one of the leading experts in TN and ATN, and sees patients from all over the country. If at all possible, I would suggest you consult with him. I can’t stress enough how pleased I have been with his care!
Best of luck to you

5

Hi Christine,

I have not tried Tegretol. Is that the drug that is linked to hairloss? I don't mean to be vain, but I already have fine hair. I am going to make an appointment with Dr. Brown, I always feel like I am the one doing research and asking the doctor to try x. Obviously have not been successful in my recommendations to him!

6

I don’t know about the hair loss link, but I do know it can interfere with liver function, so you would need periodic blood tests. It is often the first drug prescribed for TN, not just because of its effectiveness, but if you respond well, it is a sure sign you have TN.
I hope you get to see Dr. Brown! The major focus of his practice is TN, in all its forms, so I am hopeful that he will be able to help you. I will be back in NY in October for him to perform the MVD on my left side- he is the only doctor for me!
Please keep me posted!

7

Christine, how difficult is it to get to Dr. Brown's office? Do you need to go through New York city itself? I'm kind of a wimp when it comes to big cities. I hope everything goes well with your MVD.

8

He has two offices, one in Rockville Center, and one in Great Neck. They are both In Long Island, not in Manhattan. Both areas are more suburban, not big city. If you call the office, ask to speak with his assistant,Kathy. She is an absolute doll, and more than happy to answer any question. Very helpful with coordinating things for out of town patients.

9

Your symptoms sound exactly like mine Sinus infection that causes pain in upper and lower teeth. Took 22 years to diagnose. I've been on antibiotics almost constantly for that long. I don't get the quick shocks. I generally have a throbbing that increases throughout the day. I take 500 Carbamazepine in the am and 600 at night. Also, when it feels more like a sinus thing, I take 2 nyquil sinex and 800 ibuprofen and go to sleep (if I can). That seems to be the only thing that works. I've noticed lately that I'm having a lot of ear pain. Not really in the ear, but more in front of it around the nub. I hope you understand what I mean. I see my GP and am avoiding a MVD as long as possible. Many times it does not work and I'm not insured. Mostly, my pain is on the right but is starting to venture left. God willing I can handle it for many years to come without surgery. I do however find myself sleeping or in bed most of the day.