Tingle tingle tingle

Hi all, I don't know if there has been a post on this before, totally new to the site and totally new to TN. I have been living with TN since 6 months and I am on Tegretol.

It's a almost unheard of disease where I live, I was lucky I think that the doctors at the clinic I go to figured it out quickly enough. Anyway, that means that I know little about TN, except for what I've been seeing on the Internet.

Can someone tell me if all that tingling in the face and head is part of this? Wow it's weird.

Hello Emil2y,

I am new to this site as well. I have had TN for 8 years and yes tingling is a part of the strange feelings you get. I find that it can happen over a large area or just a small bit of my face (which is a trigger point to me).

The pain came back shortly after the tingling. I have felt it before but I think I never conciously associated it with TN. Still got the tingling.. Going to a business dinner this evening although I'm having a little pain when I chew.

Yep, it's a tingly, burny, crawling type feeling. I get it all the time.

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Thanks for the responses everyone.. At least I know its all related to the same thing.. really takes some getting used to.

Thanks for the advice Kc Dancer Kc! I'll try to find that book! :)

Hi Emil2y

I’ve had TN for three and half years and the cast of weird sensations come and go, and come and sometimes stay. Chewing is definitely a trigger. I also suggest you start keeping a pain diary. It’s not always evident what the triggers are but when you write them down you begin to see the pattern. And then sometimes the pain and/ or tingling/weird sensations are spontaneous.


I also get tingling in my face and in my head and skull. These symptoms present (while on medication) led a neurosurgeon to the theory that I have type 2 TN....My TN originally presented itself as type 1 with specific areas of constant pain. Because it now floats....I am believed to have type 2. Two surgeons do not believe that I am a candidate for MVD and I am doing well on low doses of tegretol.


I have this feeling all the time too. 'tingly, burny, creepy' as described by Donna Cooke above sums it up pretty nicely. Its how I know a bad spell is coming on, there will be a tingling sensation in the sinus area along with a deep sense of uneasiness about what is to come.

Hi Emily,
I too get some tingly, crawling feeling on my left side cheek not always but with pain. It is bizarre. I now have TN on both sides and each side symptoms are diffrent when they presented. You will see that we all are the same with this and yet quite different. As you read each ones story we all have experiences that have turned our world upside down. There is help and there is hope. They have come a long way in treatments. When my grandmother had this some 30-40 years back there was no surgery to help and not many doctors knew how to treat this. Looking back and remembering how much she went thru makes me so sad for her. Like today alot of us chase our tails in search of someone to help us, going from doctor to doctor. Today we have more acsess to info that empowers us with knowledge and understanding. To beable to find doctors is at our fingertips today. So it does not matter where you reside alot of physicians may never come upon a patient with TN in the lifetime of their practice, but if he listens truely listens and empathizes with you you will be guided to a doctor than can help. We have to help too by saturating ourselves with info and become our own advocate. Hope this helps Emily and Welcome to our site. There our amazing people here for support one thing we have in common is each other!
My Best

Lots and lots of tingling these days.. It's driving me crazy.. Anyone have any suggestions about what calms them?

Oh it’s hard, Emil2y. So for me it’s: no talking, no eating, a quiet dark room, settle my mind and anxiety, stay wrapped up and really warm, rest, take tramadol if all fails. Tall order! Hope something works for you.

Tingling intensifies when I'm overly tired and/or having allergy issues. So, it is a cue for me to cool my jets and give myself permission to rest a little more than normal. Today is unusually tingling for me, allergies set in motion by baby lotion. Couldn't stand to be around people talking and laughing so had to come home to rest.

What annoys the most is half of my tongue tingles and I salivate a metallic taste just on the TN side...nice...on the plus side, the sun is shining, a bird is singing and I think I'll check on my tulips to see how they are faring! Hang in there!