Does anyone here have Trigeminal Neuralgia?

I've posted on here before about a long toothache (or I should really say teethache) that I've had in my front teeth for 11 months now but my last post got overshadowed by everyone else's posts.

Long story short, after seeing 4 different dentists multiple times and getting a root canal on one of the teeth which didn't help the pain, I was finally referred to a neurologist by my regular dentist who seems to think I could have Trigeminal Neuralgia.

I don't know about any of you but I've never heard of this until recently but it scares me nonetheless since it's a long life disease and before all of this started, I had never even taken a Tylenol before believe it or not. Anyway, for the past month, I've been taking Tegretol to control the pain but it's not helping much anymore and every time I call the neurologist, he just quickly suggests an MRI without discussing any other options. I can't get an MRI right now due to the holidays, plus even if my insurance covers part of it, I'll still have to meet my deductible and I do not have that kind of money.

So seeing how nothing helps the pain, I don't know what to do. In the past, the few times I've gone to several emergency clinics, they tell me since it's dental related, it won't be covered under my insurance so I've never been in to see the doctor. I can't talk to anyone about this because no one seems to care or understand, not even my regular dentist or neurologist. The dentists that I've been to for second opinions tell me to stick with my regular one since I've already invested enough time and money with them and the next closest neurologist is nearly 2 hrs away. Ugggh.

I am losing my mind and just want to cry all day but I can't because I work in customer service and have to remain strong.

Post Edited By Moderator (Blessedx8) : 12/23/2013 2:15:34 AM (GMT-7)

Hi Jayne,

I have something similar to TN -- trigeminal neuropathy. Although for me, that diagnosis is one of several that I have been given & only explains a portion of my actual pain/the condition causing my pain, as much more than just the trigeminal nerve is involved in my case. In my case, my trigeminal neuropathy is secondary to a severe eye injury in conjunction with 2 ocular autoimmune diseases on top of several other preexisting eye issues (simply put, the eye(s) is a mess). My main source of pain is my eye -- actually, behind the eye, to be exact. When my eye gets really bad I get radiating pain across my face throughout the regions innervated by the first 2 branches of the trigeminal nerve (V1 & V2 = ophthalmic & maxillary) because all the inflammation behind my eye compresses those two nerves where they emerge from the orbit. That is something that is relatively new for me, or at least significantly more of an issue now than it was in the past.

Unfortunately, in my case, very little has helped with my pain. That is partly because of the nature of the disease(s) (nerve pain, and trigeminal neuralgia & neuropathy specifically, are notoriously refractory to medications, plus my autoimmune conditions aren't treatable at this time) & partly because of my unique physiology (I have a genetic liver condition which prevents me from metabolizing most pain medications, anti-inflammatories, and nerve medications, among others). I do have an implanted trigeminal nerve stimulator (same device as a spinal cord stimulator, or "scs," but instead of the leads being on spinal nerves, they are on branches of the trigeminal nerve in my face). The stimulator helps somewhat to block/disrupt the pain signals, but it also has some major limitations (mostly because my pain involves more than just the trigeminal nerve, and the part of the trigeminal that is most involved cannot actually be accessed directly by leads) & seems to be less effective for me now than it was when I first had it implanted 3 1/2 yrs ago. The stimulator was a last ditch effort though, so it certainly would not be something that your docs would suggest to you anytime soon, if at all. However, some people do find trigeminal nerve stimulators helpful for reducing the pain from TN. Although I've only ever heard of stimulators being used for TN for facial pain, not tooth/oral pain (but then again, before my case, no one had ever heard of/considered using it for ocular pain either, so it may be possible).

It sounds like in your case, the branch of the trigmeinal that is involved is the 3rd branch (V3), the mandibular branch of the trigeminal nerve. That branch innervates the lower jaw and teeth among other things.

Have you seen the neurologist yet? It certainly sounds like seeing a neurologist is a logical and appropriate next step. I know you said that you can't have an MRI done right now, but likely whoever you see is going to want you to have an imaging study done before they recommend any kind of treatment, etc. At the very least, they are going to want to see you in person & not just prescribe something over the phone.

Also, like anything else, not all doctors, and not all neurologists are created equal. It might be worthwhile to look for a neurologist who specializes in headaches/head & facial neuro conditions. There are even neurologists and neurosurgeons out there who specialize in trigeminal neuralgia & trigeminal neuropathy exclusively. I started off seeing a neurologist who specialized in headaches & the like, and ultimately, she referred me to a neurosurgeon who is a leader in the TN medical community. Any neurologist would be able to help, but the TN specialists will obviously be more up & up on that particular condition than just any old neurologist. I can tell you from experience that that is an important distinction if you have an atypical presentation, etc, where you aren't a straightforward by-the-books case.

If you can't get in to see a neurologist (I know you said that you'd have to travel quite a distance to see one), I'd suggest that you at least go see your regular doctor (not dentist, but MD/physician) and talk to him/her about your pain/your dentist's concerns about you having TN. Perhaps your doctor could treat you until you are able to see a neurologist. I don't see why your regular doctor shouldn't be able to get you started on some medication for nerve pain, like gabapentin or pregabalin. That is the usual first step.

Anyways, I'm sorry to hear about what you are going through with your teeth. It certainly sounds like no fun at all (to put it lightly)! Not to mention how frustrating it is to not be able to obtain a proper diagnosis or treatment (believe me, I know all too well). But this forum is a wonderful place to come to vent, and seek advice and support. And best of all, everyone here UNDERSTANDS!! We may not all have the same type of pain, but we all have pain. And pain is pain regardless of what form it takes. It impacts us and our lives all the same, so we can all commiserate with what one another is going through!! So in the mean time, keep posting & guaranteed everyone here will do their best to try and help you get through this difficult time.

Skeye

Post Edited (skeye) : 12/23/2013 11:05:26 PM (GMT-7)

Wikipedia ". Trigeminal neuralgia (TN, or TGN), also known as prosopalgia, suicide disease, or Fothergill's disease is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. The clinical association between TN and hemifacial spasm is the so-called tic douloureux. It has been described as among the most painful conditions known to mankind. "

Looked this up because your symptoms sounded familar - my father was (finally !) Dx with tic douloreux.. in late 1960's./ early 70's. . He would be in his early 90's if he were still alive so was about 50 at that time. Am trying to remember anything that might be helpful for you while figuring out dr, etc

Diagnosis came After doing many things to eliminate other causes including having all his teeth removed.

He described it as feeling like a red hot knife blade laid across his face. The pain was intermittent as was the intensity.

Treatments he had : in injection to kill the nerve... helped for several months until the nerve grew back.

He swore by acupunture.. not covered by VA or other gov coverage he had at the time so he did not go often. I remember he said sometimes he could only sleep while the needles were in.

As Merrida said, he found he needed to protect his face from cold weather, especially cold wind. He did not like anything touching the skin but made that exception. He laid a hot water bottle or heating pad on his pillow prior to going to bed.. so it would be warm anywhere his head & neck touched.

I lived out of state by this time .. he did not like to discuss his issues with anyone.. ever. ; ( as I held his health power of attorney much later, I found out all kinds of things that even my mom did not know.. lol)
So there is much I do not know.

The pain, as I said, was intermitten but it did eventually calm down enough that he rarely show outward signs of it:
no wincing, reddening of face & neck, etc. .. by early '80's, unless he exposed face to cold or ate cold foods.. & he loved a little cream now & then

Wishing you the very best.
And happy holidays.
(I better get to bed so Santa can come !!)