I seem to have a lot of crawling sensations and itching where I experience paing from my TN. When I talked about it to my Neurologist, he looked at me as if he hadn't heard of that before. I should have asked him about it, but my brain isn't working that quickly these days. So my question is, do any of you experience this? I am taking Percocet and thought it could be from that, but wouldn't I have these symptoms on other parts of my body? I just really want to be certain I have been diagnosed correctly. I am on 500 mg of Tegretol 2x/day and am still having pain and these symptoms many many times a day. Of course, the intensity of the pain has lessened greatly and I wonder if these other symptoms are what happens when the Tegretol lessens the intensity of pain. Unfortunately, my doctor doesn't give me a lot of information. I want to be sure I am heading in the right direction, if there is one.

Thank you for your help.

I get crawling, cramping, pulling, tugging, boring sensations and I also get muscle twitches which go on endlessly. I don't get itching though. I also experience what I can describe as a firework type of feeling, only that it is electrical in nature and if you can imagine bursts of feelings that you feel that resemble fireworks, then this discription will make sense to you. That happens frequently around my lips and nose. Two of my neuro doctors told me that these sensations occur because of continued damage to the nerve. The third one I have hasn't shared anything with me, but he regularly puts me through the neuro exams, and its sad because he's supposed to be a "super doc" on the subject. It seems to me, at least, that a lot of people don't talk about these oddities that are associated with this condition. I guess its a little difficult for normal people to imagine this stuff, I don't know. Take care!

I have the tingling, pulling, stabbing feelings in my face as well. I'm told it due to the nerves that were damaged during my MVD surgery in 2004. I also have pain in my eye, which also causes my to go completely blurry from time to time. I have to see a Opth. every 6 months to ensure my eye is ok. Does anybody else have problems with there eyes due to TN?

I get stabbing pains in my eyes too, as I have bilateral TN. I also get it from the inside, but I think thats related to ON.

Saw this post and had to pop in. First I have not been dx with TN however I am pretty sure that is what is causing my facial pain.

I have had on and off numbness (not true numbness, sensation of numbess) on the right side of my face from my ear over to the edge of my nose and up to just under my eye. More recently I have had it travel into my ear canal and up behind my eye.

I had one or two days around Christmas where I had burning senstion of my right eye and stabbing pain in the corner of the eye.

Last week I had 2 episodes each day for two days off awful electric like pain starting near my ear and travelling across my cheekbone toward my nose. They came in flashes and they were quick.

Again, last week along my hairline above my forehead on the right side it felt like I had bugs crawling in my hair but there was nothing there (eewww I know)

I am having muscular twitches to that side of my face as well.

Thanks for letting me share!

I got that all the time. Had my MVD surgery Jan 14, 2009. Have found the itching has gone away.

Sarah

That's how I started out with this terrible crawling itch...but my itching is in the brow and forehead and it drives me crazy. Also for a while I had it on the nose with felt like tiny hairs just tickling it..I practically started to cry with frustration. Fortunately I don't have the stabbing shocking pain I have the constant horrible ache and sensitivity. But I have experienced the the shocking pain on the lip and nose I didnt know what it was from....I thought it was from clenching my teeth. When I told my Dr he didnt think it had anything to do with it. He told me to take benadryl. I take carbamazephine 100mg 3x a day. Hasnt got rid of the pain totally but it did take away the burning. And helped alot with the mood swings.

Hi Deb! I've had ATN/TNP for 7+ years. One of my first symptoms was an itchy spot on my scalp and another on my face near my temple. The feeling could go from itching to itching/burning, creepy crawly.

I also had bad eye pain, I would wake up in the middle of the night and it would feel as if I was being stabbed in my eye.

I also had ear pain, and after dental work in 2002, I now have constant pain in the whole right front upper quadrant of my face, along with any of the above sensations and with added crushing, boring, tearing stabbing, and occasional electric pain.

The nerves in our body can act up in so many ways...I am suprised your Neuro had the reaction he/she had. I was told by mine that all these are symptoms of Trigeminal nerve pain.

I believe you are going in the right direction.

One thing I found helpful was to write things down, from my symptoms, to the intensity of my pain if any thing added to or started my pain, etc.

This is something that my Dr.s found helpful also. We can't be expected to remember everything so I also found that having either my husband or daughter present with me at appointments, so they could ask things I may have forgotten or to remember things that the Dr. said. It was also great moral support as my family has seen me go through all of this so they are a great asset to me at these appointments.

I wish you the best and hope you find a place of peace and comfort soon. It is possible even with this terrible disorder.

Mar

I have been experiencing an unbearable itching sensation on both sides of my face, along my jawline, that-no matter how hard you scratch- WILL NOT go away. Also, the spots closest to my ears are practically numb to the touch, as is the tip of my nose occasionally, along with the tickling peeling of tiny hairs. I have seen every doctor there is to see about this issue, and my neurologist has been treating me off of the assumption that it is trigeminal neuralgia. However, I do not believe this to be the case, because I do not experience any pain, nor has the itching or numbness spread along any full branch of the trigeminal nerve-it is extremely localized. If ANYONE has ANY information about these symptoms, PLEASE respond, as I am quite close to ripping my face off.

I get the itchy and crawling feeling too, along with the eye stabbing and sometimes it feel like a balloon popping out of my skin. TN is fun isnt it?