Recently Diagnosed w atypicaly TN & Confused
 

Hello,
I started experiencing facial pain during a bout of what my doctor said was Labyrinthis (viral inner ear infection that followed the flu) in January of this year. I've got from doing triathlons and running daily to barely being able to run a 5k.

The facial pain started as non-localized. I kept holding my cheek/eye area and saying that my head hurt. Then it localized to just below my eye...along my cheek bone. I assumed it was sinus related. Then I had 2 episodes where the pain was unbearable.

Advil takes the pain away, but I need to take it every 5 hours. I read that pain meds don't typically work on TN?

Also, it feels good to put pressure on it - so I push on my cheek bone alot when it's flaring up. I read that pressure can trigger TN? But this isn't the case for me.

I thought it was going away, as I"ve been off advil for a few weeks. The past 3 days, however, the pain is back. I'm going to have to start taking advil again. It's now a sharp pain in my jaw - that burns along my cheekbone and the bottom part of my nose. Only on the left side.

Dentist said xrays look fine and no TMJ.

Neurologist said atypical TN. MRI is normal. There is a 'questionable' area that he said he can look into more on the MRA...but it looks normal. He said that if the pain returns, he would do a thinner cut on the MRA in a spot that might look like a potential loop. But, when I returned for the follow up...I told him the pain was gone. Unfortunately it's back.

Does this sound like TN to you? Why does advil and pushing on it help...when everything I have read says that it shouldn't? Is this because it's aTypical TN?

I'm scared, because everything I have read said that it only gets worse. I didn't take the Neurontin, because I was managing it fine with Advil and I didn't want to believe the diagnosis.

Any help or input is appreciated.

Thank you!

1) Trigeminal Neuralgia cannot be alleviated by normal pain medication as it is a nerve pain. It can only be alleviate with special nerve pain medications such as Carbamezapine (Tegretol)

2) Trigeminal Neuralgia is a degenerative disorder. It WILL get worse over time if left untreated. It can go into recession for up to 6 months but it will not heal on its own -- anybody claiming otherwise is saying a complete falsification.

3) Being unable to see the compression cause on the Trigeminal Nerve is not proof that you do not have the disorder -- it is also not prood that you DO NOT have the disorder. Trigeminal Neuralgia can be entirely diagnosed via symptoms through a medical practitioner educated in treating the disorder -- and was the case for myself before I received surgery.

4) Over time your pain will change and spread along the trigeminal nerve and any areas that are connected to it, including your face, cheek area, teeth, etc.

5) You must only trust the judgement and orders of your neurosurgeon, seek multiple opinions and if you can find neurosurgeons who are known experts in this disease to help you.

You will be fine! Be smart and do not panic. Many have triumphed over this horrible disease including myself, but you be tactful in your journey.

Greetings,

This post and reply are sobering and yet very helpful. It appears that we have a case of atypical TN here in our home. Thanks for taking the time to share your experiences and observations.

Heyjude