New member with questions about possible Trig Neuralgia

I went to a pain doctor yesterday and he thinks that I have Trigeminal Neuralgia. He wants me to do a test which will cost $800.00, as well as a MRI. He has put me on Neurontin, but it makes me tired and sleepy.

I have had pain in my back molars for quite some time. They both have had root canals within the last year.

Has anyone else had this condition? I also suffer from depression from other pain problems. Does anyone have suggestions?

Post Edited By Moderator (nvrthesame98) : 7/5/2015 3:38:39 AM (GMT-6)

Hello,
We do have a few members who have TN. If you add a title to this post calling it Trigeminal Neuralgia those few people might see it and respond.

Another suggestion: there are some very good on line support groups that only deal with TN. You can find those easily in a search. One I am familiar with is facepainhelp.com. You will find lots of information plus a support group. Best wishes to you!

I have TN which developed after having my jaw replaced. I'm not sure why that test would be required, but I'm not a Dr. Maybe he's trying to rule other stuff out?

Since it's nerve pain, Neurontin makes since. It can make you pretty tired the first few weeks, but that usually resolves after your body adjusts.

For me, it feels like lightening up the side of my face, along my sinuses, and across eyebrows. Every few months I receive nerve blocks which help more than meds. I actually had ones done on each side Monday. Needles aren't fun, but I feel they are worth it in the end.

Feel free to ask any questions.

I know it's hard, but hopefully you'll get some relief, soon.

Hello and welcome to the forum. Sorry for the issues your having and personally if I had to pay out of pocket for a test to prove something he's 95% sure of I would seek a second opinion,give one of the meds to treat TN a chance to work and if it does that would add to the 95% and I would take my$800 and book a cruise!! Is the Dr a oral surgeon? Or something else?

Anyway that's my two cents worth and it is just a personal opinion. The meds in the class with neurontin take weeks and sometimes longer to build up a serum level and the dose usually changed several times to get relief. Some of the drugs in the class also successfully treat depression as well and one of those could be a positive choice for you so working with the Drs and making sure that all your treating ones are kept informed about the issues your having is important.

Slow holiday weekend for the forum but others will trickle in to welcome you. Good luck to you as well.




PS: I gave you a heading for your post

Hi, and thank you for your comments.

The doctor that I am seeing is a pain doctor and is also educated as a dentist. I have also seen several other dentists about this condition as well.

Thank again,
Aiki

Hi Aiki4,

I have trigeminal neuropathy, rather than trigeminal neuralgia. The two are similar but different. Trigminal neuropathy (also referred to as atypical facial pain) is generally more rare and much harder to treat than is classic TN. For me, it was brought on by nerve damage secondary to an eye/orbital injury.

The feelings are usually different as well. Trigeminal neuropathy pain is more commonly a sensation of deep, dull pressure, combined with stabbing sensations. Whereas trigeminal neuralgia is classically more of a burning, tingling pain. And the pain from trigeminal neuropathy is constant, whereas the pain from trigeminal neuralgia is almost always intermittent. But of course, our bodies don't always follow the rule books, and sometimes these two conditions can be difficult to distinguish from one another.

Gabapentin (Neurontin) is definitely a first line drug for nerve damage/TN, and I believe was the first medication that I ever tried, as well. However, do not give up if it does not help. There are many more meds to try. I spent over a year just trying different neuromodulators after I was first diagnosed. And although I ultimately did not respond to any, if you do indeed have neuralgia and not neuropathy, you have a MUCH better chance of responding to one or more of these types of medications. Not to mention nerve blocks, or other neuro-ablation procedures.

My guess is that the additional testing your doctor ordered isn't necessarily to "rule-in" TN, as much as it is to "rule out" other potentially more serious conditions that can cause similar types of pain, such as a tumor, pseudo tumor, vascular anomaly, or MS. If the gabapentin helps, and your doctor is okays it, then you don't necessarily need the additional testing. And negative testing doesn't necessarily mean that you don't have trigeminal neuralgia or neuropathy, either. As it doesn't always show up on scans (mine does not). So many times response to treatment is confirmation enough! And that will definitely save you some money!

There are tons of resources out there on the web that can provide you with more information and guidance about TN, which I suggest you read. I do hope that you find the gabapentin helpful. Like others have said, it may take several months and dosage adjustments before you really know whether or not it is working. So hang in there.

Skeye

PS - The tired/sleepy feelings from the gabapentin should resolve, or at least reduce in time. They are extremely common side effects. Just be careful to make any dosage changes slowly, as those feelings will often reoccur until you get used to the new dose.

Post Edited (skeye) : 7/7/2015 12:05:22 AM (GMT-6)