What do you have to do to get a diagnosis?


Just found this support group. I have been suffering severe facial pain for two years. It started on the left side and after a dozen visits to the dentists including fillings and crowns I was referred to an Oral surgeon. I was diagnosed with A typical facial pain and given Nortryptilline which was not effective and swithched to Amtryptilline by my GP which reduced the pain.

Two months after starting Amtrytilline I started to get pain on the right side which was very similar to dental abcess pain after several more visits to the dentist I had a back molar extracted on my request. The pain relented for about 4 weeks then returned it is now worse than ever. I have since taken Carbamazepine and am now on Gabapentin and awaiting an appointment at my local pain clinic. I have also been having accupuncture treatment but am not sure how effective it is sometimes it eases the pain sometimes it is worse.

The Oral surgeon discharged me in July 2012 and dismissed the pain on the right side and diagnosed a dental abcess which it obviously was not. The pain never occurs simaltaneously and has been on the right side 95% of the time for the past 3 months and is always worse than on the left side of my face. Worryingly I am also starting to get pain in the back molars on the lower right and am not sure if this is a dental issue or this is spreading to the lower nerve branch.

I am desperate to get a diagnosis so I can consider possible treatments I have asked my GP twice to see a neurologist but they seem reluctant to refer me? I am currently off work and have no idea when I will be able to return. Stress , cold weather , sudden loud noises can be a trigger and I have changed my eating habits to avoid foods that require heavy chewing. I also have high blood pressure and have noticed on the rare occassions I forget my medication the pain returns quite quickly.

It is such a relief to find this support group as trying to explain the pain to people is very difficult and I was begining to think I was mad.


Hi Rob

So sorry to hear you are have such pain. You are not “mad”! After you get to the pain clinic press to get to a neurologist with expertise in your area of neuralgia. Also, concerning meds, when you forget a dose, or have gone too long between, there is major rebound in pain (sometimes it howls). It helps to set a timer. Also use heat/cold packs, which ever is best.

Soft through the posts, there is a lot to learn and the support is terrific.

Peace and Kindness

Hi Rob,
Have you and your doctor ever discussed Trigeminal Neuralgia? When TN is suspected a Referral to a neurologist is usually the next step as well as an order for an MRI. The MRI is to eliminate the possibility of MS or a tumor.
Anti-convulsant meds are given, Tegretol ( carbamazepine) or Neurontin (gabapentin) are first choices.
These meds need to be given time to work, as they build up in your system. Typically people experience relief within 600 mg -800 mg Of Tegretol. Of course we’re all different and respond differently to the meds.
Most side effects tend to dissipate or lessen as time goes on.
If you haven’t already done so, I would highly recommend talking to your doctor about what YOU want to do next.
You might need to find another doctor if you find yours isn’t willing to go forward with you. Unfortunately we must advocate for ourselves.
This pain is affecting your quality of life, that is a problem that needs to be addressed and your doctor needs to take you seriously.

I wish you the best as you go forward. I hope you find relief soon.
(( hugs )) Mimi

It DOES sound like it could be TN, especially if you are responding to anti-convulsants, BUT I would keep pressing your GP for a referral until they give you one so you can get to the bottom of this. Call them every other day if you have to. Sometimes if you pester the crap out of them, they will do it to get you out of their hair, LOL.

My GP told me I didn’t need to see a neurologist that they could treat me. Is this true? I just started meds so so far no relief!

Forgot to mention I was just diagnosed 2 weeks ago. Pain started 14 weeks ago.

If you're getting constant aching, burning pain, the amitriptyline is the first line of treatment. Some people give up too early, but if you get to a high enough dose, you might find relief. I took it and when I got to 100mg/day it really made a difference in my quality of life.

If you're getting the electric shock type pain, then the anti-convulsants like Tegretol are the first line of treatment. However, many doctors (and patients) think that Tegretol works for any type of TN - this is not true. The constant, aching burning pain responds much better to a tri-cyclic antidepressant, or a combo of both meds.

You need to be firm with your GP and demand a referral to a Neurologist. Tell him/her that you believe you have TN, one of the most painful disorders you can have, and the doctor is violating the Hippocratic Oath he/she took by not helping you relieve the pain.

To be honest though, it's possible that a Neurologist might not be much more help. The best thing you can do is be your own advocate -- do all the research you can, decide what meds or treatments seem right for you, and discuss them with your doctor.

Crystal- they have me on a 300mg capsule at night of Gabapentun/neurontin.

The pain I’m having is the worst I’ve had in my life but I hear everyone say “burning”. I don’t know if that is what I have or not… It’s like throbbing, jabbing, stabbing flare ups that last anywhere from 5 minutes to 5 hours! I have a constant pain above my right eyebrow (normal type headache, yeah the ones most people think are bad but at this point to me is when I feel my best).

My doctor has never seen me just his PA. I can’t get them to ever return my phone calls for pain management! It’s literally a nightmare!!!

I live in a small town in Maine (Bar Harbor) so we don’t really have a lot of specialists around here! Would a neurologist help me with my pain management?

I swear the only help I’ve gotten is from this site! I don’t know what I would do without it! Seriously!

Thanks for listening! Edi

You definitely need to see a neurologist.

I’d recommend you see an attorney. Perhaps your dentist ran you off for a reason. You do want to talk with one so you can get in within the statute of limitations.

My pcp was sol’ed and did not get me to a neurologist who immediately said it was dental malpractice… Only it was too late.

Inexcusable on the part of my pcp.

And the neurologist did get me some relief.