Hope I do this right!

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1

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!

Feels good to get ask this out. :slight_smile:

Amy

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Hi Amy,

Yes there is hope. Although, there is no cure for TN, there are a few procedures neurosurgeons can do for you. Do you know hat you have? TN1 or TN2?
Have your PCP refer you to the best possible Neurologist in your area and starT from there. They will probably start you on mess first, havE you go through an MRI to see if there is a blood vessel touching the nerve.
All the best and feel free to contact me if you have questions. I will gladly share my experiences with this beast of a condition, hoping that it can be of help.
Sergio

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Thanks for the reply Sergio. My doc said it’ll take months to get an appointment with a neurologist. He set me up with an ENT in the meantime. I have a gland under my right ear that’s swollen and tender…I think he wants to make sure it’s not something more structural? I don’t know for sure. I need to make sure he gets things moving with a neurologist too though. No use waiting even longer to get in.

Reading the other posts helps a lot. I see stories similar to mine. I’m generally a really patient person and this pain makes it hard to interact with people… Seems like I apologize several times a day for snapping at the people I love.