Hi - I’m new here and I’m glad I found this group. I had no idea what it meant when my doctor kind of off-handedly said he thought my jaw pain was trigeminal neuralgia. I looked it up and learned what I could.
He started me on Cymbalta - because I’d been on antidepressants for years. I had ramped up to the full dose but still had crushing pain. So he switched me to Tegretol 100mg to ramp up to 200 after a week.
The biggest problem I have is that this doctor is new to me. I’d had the same doc for 20 plus years. I have several health issues that he caught with blood tests at my first appointment with him. So he doesn’t know that I’m very drug sensitive - and he switched up my diabetes meds, added cholesterol meds, increased my blood pressure meds…So even before he diagnosed TN my body was adjusting to new meds.
To top it off, when he switched me off the Cymbalta he didn’t prescribe any antidepressant. So I went through some withdrawals (I call them brain zaps) while my brain was being introduced to Tegretol. He added Lexapro a few days ago.
I’m sorry to throw all this out there but dang I’ve had some terrible days this past couple weeks. This can’t be how the rest of my life goes.
My pain started about 7 months ago. Just an occasional sharp pain in my lower right jaw. I went to the dentist and was surprised when they couldn’t find anything on xrays or exam. I figured I’d developed a sensitivity - switched tooth paste and ignored the occasional pain for a few months. It became more frequent and harder to pinpoint. Went to a second dentist who also found nothing on xrays but suggested it could be TMJ. So I got the night guard fitted and switched to soft food for a while. But it kept getting worse. It started hitting my upper jaw, and I started feeling like the right side of my face and even my neck was swollen and the muscles in my right cheek and jaw would tighten up and pull my lower jaw back and to the right.
So I mentioned it to my doc. He pressed and I winced. That’s how I was diagnosed.
Can someone tell me there’s hope? I’m exhausted and my brain is rebelling!
Amy, you seem to have a couple of issues here, I think. Your doc was careless in the details of your prescriptions. Cymbalta is primarily an anti-depressant, but is also sometimes tried for neuropathic pain, so I understand why he wouldn't have wanted to introduce a new anti-pain med "on top of" the Cymbala. But he should have monitored you more closely for reactions to med withdrawal. Your dentist also very likely mis-diagnosed TMJ -- which is a frequent problem with people in general dentistry because they get very little training in the assessment of neurologic pain.
There is "hope" for better medication management. Over time, your body may acclimate better to Tegretol, and you may be able to tolerate higher doses. A lot will depend on side effects after 4 to 6 weeks treatment. If Teg isn't effective at a dose you can tolerate, there are other meds like Trileptal or Neurontin. There are over 70 combinations of meds for atypical TN (called "type 2" or "trigeminal neuropathic pain"). It's a trial and error process, but one that helps many patients.
I am sorry that you are going through this painful experience. Red is right on the button about medications. There are many out there and if one doesn't work, another might.
I'm also slowly realizing that it is difficult to find a doctor who is truly knowledgeable about TN. I have an appointment in a few weeks with an orofacial pain dentist, whose expertise is in treating facial pain. I think that may be what you need to look for in your area.
Warm welcome Amy, one thing is certain, there is always hope… Great advice above from Red & rissmal. Best thing to do is learn and read as much as you can, don t believe everything you read, keep an open mind we often have to advocate for ourselves and unfortunately are often more knowledgable than our doctors and specialists.
This group has an amazing diversity to it, we all share commonalities, but no case is exactly the same. We all must share and learn from each other and it’s so nice to be amongst others who truly understand what we go through.
I hope you will find the sense of community here as comforting as I do.
((Hugs)) Mimi
