I was just given a preliminary diagnosis of trigeminal neuralgia and, after spending too much time reading online about it, am completely terrified. I will be meeting with a neurologist soon (the same one I see for migraines) to discuss further. I also just ordered a copy of Striking Back, but it looks like it may take a while for it to arrive.
In most ways, my symptoms seem to match what I read online: it feels like dental pain, on one side of my face (usually in the lower molar area, sometimes in the upper), and is triggered by warm or cool food and drinks, or chewing, or sometimes even the cold air (if I open my mouth when I'm outside). The dentist and endodontist have found nothing to explain this. The pain usually lasts about 10 seconds, although one episode lasted for over 2 minutes. The pain is intense -- like an extreme version of cold sensitivity in the teeth -- but I don't know that I'd describe it as shock-like or stabbing. Also, because it doesn't last that long, right now it seems less unbearable to me than a bad migraine.
Right now, the more painful episodes are pretty infrequent, with the last one occurring several days ago. But what does happen more often (several times a day) are episodes of pain or discomfort that seem to have the same triggers as above, but which are less intense -- not that different from the discomfort of hot/cold sensitivity on the teeth. It's usually (but not always) only on the left side. I also sometimes notice a general dull ache in my jaw, which I keep assuming has to do with nighttime clenching. (I have worn a nightguard for this reason for years.)
I'm wondering if this is how TN normally begins -- if it begins mildly and sporadically, and then inevitably progresses to more extreme pain. I'm clinging to the hope that maybe this is something other than TN. (For example, I keep thinking maybe this has something to do with the nighttime clenching -- that maybe it has caused some tooth damage that's causing pain even though the dentists aren't able to detect it. But maybe that's wishful thinking, because I'm hoping so much that this isn't really TN.)
Thank you so much for any information, suggestions, etc.
I too am a new member on this site. Have you had aan MRI of your brain? I think that is absolutely necessary in order to see if there is an apparent cause to your TN. Her is my story that I wish to share with you…
I was first diagnosed with trigeminal neuralgia in November 2003 on the left side of my face. An MRI showed that I had a epidermoid cyst in the lower Pons area of the brain on the left side. The resulting TN pain was excruciating. I endured this for neatly six to seven weeks. Then, I underwent brain surgery. The cyst was not removed because it was involved and grown into the nerves. The operation was to de-bulk the matter in the cyst. The result was successful. From time to time I did suffer from migraine headaches. I’d have subsequent MRI’S but they showed no change with the cyst nor any new development with the brain.
In 2014 I was again diagnosed with TN by a new neurologist. (To me) This time the TN pain is involved in the right side of my face. I did have an MRI but that showed no change. I was prescribed with Gabapentin. The TN pain did dissipate but in September 2015 it came back. It dissipated again after several weeks. Then this year in Mid January of 2016 the pain has come again really bad. Again, I am taking Gabapentin and I had an MRI in February. The initial report of the MRI seems to show no change or problem. I am following up with the neurosurgeon who did the brain surgery in Dec. 2003.
I hope you get an answer soon. Please take care and I pray for you too.
I have 24/7 pain in my left bottom teeth unless I’m sleeping. Dentist endodontist etc can’t find anything wrong. Let me know if you figure anything out.
You asked if your pattern of pain is common among TN patients. Though there is no single profile for symptom development or progression, your experience will likely be familiar for a fair number of people diagnosed with TN. The triggers you describe seem pretty typical.
This isn't to say that you cannot also have a dental issue. Some chronic face pain patients do. If you're also dealing with Bruxism or TMJ problems, then a properly trained dentist or maxillo-facial surgeon should be able to confirm the diagnosis by examining your teeth for wear patterns and your TM joints for physical deterioration visible in X-rays or MRI.
Go in Peace and Power
Migraine has been linked to TN incidence, migraine has been strongly linked to neck dysfunction. A thought you may want to consider.
If you get an MRI… You should get a Fiesta MRI…!
The symptoms you describe do sound like TN to me. Mine started with three days of mild achey "pain" in the left side of my face. Lasted a couple of hours each day and was just annoying. I thought it was just a weird kind of sinus headache and didn't think too much about it. On day 4, it hit like lightening. I was in my kitchen and literally dropped to my knees in the worst pain I'd ever felt (worse than I could have imagined). It only lasted seconds but then came back and kept on and off for what seemed like forever. I honestly thought I was dying. I remember thinking that this is what it feels like to be murdered. It calmed down that night and I was at my doctors office first thing the next morning. I was diagnosed by a neurologist and put on Trileptal 3 days after that. I definitely had the short-lived and super intense shocking pain but also, some of the time, had a feeling like a vice was gripping all of my teeth and jaw with bad pressure. I had the triggers and my pain often broke through my meds unbearably after a couple of weeks and then I would have to up my dose. I had a successful MVD more than two years ago on 10/30/13 so fortunately I am completely pain and med free.
Hello, I too am new to this group and was very glad that God led me to it. l I was diagnosed by my ENT. I explained to him my symptoms and he grinned and said I know what is wrong with you. I asked him what and he told me. I went home and googled the diagnosis and thought Dr. Bruce is a genius. The one big regret is not keeping a journal of things. This was back in 2011. I now have all my teeth pulled and have dentures. I do not regret that at all. My neuro dr has had me on welbutrin, and another medicacation. The last med I became very depressed to the point of thinking suicide. (something I don't agree with) so I am now on lyrica. But as I said please if you don't do anything else keep a journal and I am sorry for you having this