I am new so please forgive my ignorance but, what do you think?

I have just been diagnosed with TN just over a week ago. First it was shingles, then they determined it to be TN. I have been on a few different meds for 2 weeks. Oxycodone for the pain, Gabapentin, Tegretol, and now Dr is switching me to Trileptal. I had been taking Oxycodone 8-10 tabs a day and have today only taken 1, when I woke up this a.m. so I am obviously feeling much better.

My question is; could the Dr. be wrong about my diagnosis? The reason I am asking is because

1) I am feeling much better. I was having at least 1-2 "attacks" of excruciating pain on right side of face every hour a week ago, but have only had 2 major episodes this whole week. The constant dull, achy pain is subsiding also.

2) I was just reading on another site that an important part of diagnosis is that the person having an attack does not want the part of the face touched in any way. For me, when having the attack, I grab the side of my face as if I am trying to find the trigger point and push really hard. It really doesn't help, but for some reason that is my response to it. It feels as if all of a sudden the nerve in my face is exposed. Like I went to the dentist and he drilled into every single tooth on the right side, down to the nerve, and left it. Does this sound familiar to anyone? Is it just that it is different for everyone or could I be misdiagnosed?

Thank you,



Sorry you are going through this.

TN can come and go. Frequency, duration, sensation and location of pain can change. Also your medication could be starting to work.

Not everyone has obvious triggers and not everyone has physical sensitivity to certain touch. I don't.

Your nerve and teeth description is bang on for TN pain. Some people have Type 1, some people have Type 2 and some people have a bit of both. Everyone's pain and experience is different.

Hopefully that answers your questions.

Erica, did your Dr. Say it was “Post-Herpetic Neuralgia”? A shingles episode can lead to facial pain/neuralgia - very painful pain. I don’t have that condition and my Atypical Trigeminal Neuralgia is 24/7 severe pain for past 2 years. For 6 years before that, my pain was only once a month! I’d take pain meds for the 2-4 days it lasted and then it was gone until the next 4-5 weeks! Weird, right? So no 2 situations are the same. Extreme stress the past 2 years is why the pain went from monthly and manageable to daily and often unmanageable. Maybe get a second opinion and get educated by the Dr about post-shingles facial pain, if that’s what you have. Knowledge is power! I don’t know about your type of post-shingles pain condition, so I don’t know if it goes away. TN and ATN don’t go away. Periods of remissions and milder pain, yes. I’m hoping your type DOES eventually go away. Good luck.

My primary Dr. At first said that they thought it could be shingles. After about 4 days of the pain not subsiding at all and no sign of any sort of rash, I saw 2 more Drs that said it wasn’t shingles at all and referred me to neurologist. This is a bit confusing since there isn’t any sort of tangible test. I am hoping that they are all wrong. Lol.

Oh, Neurologist said it was atypical TN, and the MRI I had the other day didn’t show anything at all.

Erica, maybe there is a blood test that can tell if you had or didn’t have shingles? Gotta be something other than rash/no rash for the first Dr to diagnose shingles out of the blue. My MRIs always normal too. Gee, then where is this daily horrible pain coming from? It seems Drs diagnose by exclusion and then guess! Lol. Best wishes.

Erica Toy said:

Oh, Neurologist said it was atypical TN, and the MRI I had the other day didn’t show anything at all.

Hi Erica, I also have atypical, when I have an attack I too like to hold or push the areas it comes from. I think the mention of not wanting to be touched is by another person. I swear I’d growl at anyone else who came near me during a bad flare up! I hope for you it’s not this condition, if it is this is a fantastic support group

It sounds as if you have gone into remission. Lucky you if this is the case! My TN is atypical and changes constantly! Currently it's deep numbness which alternates with aching. Other periods of attack have been the stabbing, the shocks and the few months i couldn't touch my face. At all. This condition is just so......... no word for it really. You'll find out as you go along. Buckle up!

Please be kind to yourself and seek out a second opinion. Because you are hurting your not being objective. Give it some time after the crises gets better

Erica, we all have such different types of pain and responses so don’t think you don’t have TN because you’re symptoms don’t mimic someone else’s. I have never had the “electric shock” feeling. I’m having an attack as I write this and it feels more like having a spike pounded into my face. I almost always hold my face, trying to brace it because it feels like my bones and teeth will just shatter and fall if I don’t hold it all in. Sometimes I massage my face while I’m feeling pain. I do it because I think my muscles are tensing up. I’ve had TN for years and I still think my bouts with pain are caused by something else. I had dental work on Monday which triggered episodes of pain on and off the rest of the week. But I still wonder if I hurt because of TN or because the dental work was rather invasive and I’m still sore. Keep reading everything you can get your hands on and check in here to see how people cope.

Hi Erica, forgot to ask if the Tegretol worked to greatly alleviate your pain after the first couple of weeks ? Usually, neurologists usually use Tegretol as a diagnostic tool to see if a person actually HAS TN. If the Tegretol worked - diagnosis is TN. If it didn’t work - diagnosis is usually “I don’t know” (I mean "Atypical TN their “catch-all diagnosis” lol). The Trileptal is a newer, better version of Tegretol with fewer side effects. If Trileptal works for you, maybe it is TN. But still, get other opinions about that original suspected shingles episode that preceded the pain. It’s important to know a specific diagnosis - not guesses. There might be a different protocol of meds for Post-Herpetic Neuralgia to be used if that’s the case. And there might be a BETTER prognosis for you if it’s NOT TN. Maybe it’ll go away in time if that’s the case. I pray for you that your case is the best scenario possible.

Erica Toy said:

Oh, Neurologist said it was atypical TN, and the MRI I had the other day didn’t show anything at all.

Thank you very much for all of your insight and answers. I greatly appreciate the input. To be “thrown” a diagnosis of something you have never even heard of and told that it is incurable and life long is quite shocking.
I was only on Tegretol for a week. It seemed to cause the “attacks” to become less frequent and severe but dull ache was still there. After blood work the other day, Dr. Said he would rather switch me to Trileptal as I already had a pretty high concentration of the Tegretol in my blood and a slight decrease in wbc count. I assume that is why he switched me so quickly. Started Trileptal last night. So far, so good. A slight ache, not enough for any pain meds
As for the shingles diagnosis, primary dr said he would rather try and assume that’s what it was initially since TN is such a rare and extreme diagnosis to jump to. When I never showed any signs of having shingles besides debilitating face pain, and my husband went in there with guns blazing that they were just guessing and throwing different meds at me with zero results, Primary sent me to Neuro.

Thank you again for taking time to help me sort through this. Very, very appreciated!



The pain that you describe and reaction of pushing on face because it feels that everything is going to shatter if you don’t hold it together, is EXACTLY how I feel when an episode of pain happens.
It is kind of twisted to feel comfort in knowing SOMEONE gets it. Even though you would never wish this kind of pain on your worst enemy. Thank you for that.