Hi Pitmum,

Absolutely - in fact, I can usually tell how severe the pain will be by the twitching and sensations I get. It's become my early warning system and I'll immediately start to take other precautions to minimize the pain if I can. Like you, my TN comes and goes - more hanging about of late though. Must be the weather

Hi and Hugs sent your way.. Eye pain is daily for me. The weather is for sure not helping . Cold air on my head sends me into a bad episode.
My eye twitches badly also.
Crying is not an option for me either.. If I do I go into a episode.
The sharp shooting needle pains is what I get. My eye pours tears and gets beet red.
I have a hard time wearing my glasses too.. Them touching my head aggravates my head in the ear and temple area.
So went to try Contacts.. It inflamed my eye you couldn't even see the white of my eye.. That took about 10 days to feel better..
I have found that light heat on my head and temple helps in the cold weather. Just giving you some things to think about.
I am on my 4th Neuro so far she is cooperating but said I was in remission.. But being in remission for me is at any second I can change like the Texas weather does.
Really people that have not experienced this can not begin to know how you feel. So I try not to talk about it to anyone.. They just
don't get it.
My teeth also hurt which is what caused my TN. Root canal 4 years ago.
I will send prayers your way.. As it is so painful. I keep Natural eye drops handy.. Similason brand. As my eye dries out and you might try it for the moisture.. The other brands burn so bad.
Hope this helps some. Try the drops I think it will help you.. At least they did for me..

blessings to all who suffer this condition. i was diagx nine years ago. it took two yrs of looking for neuro who believed me and then i went to northwestern in chicago. looking back the key was to find a bigger place like northwestern mem. hosp or cleveland clinic etc that has seen a lot of this condition. they have a lot of great treatments. because this is a rarer condition this is where you need to go. they have treatments my drs here haven't even seen let a lone heard of. i have aypical tn so no remission but lighter on the extreme bolts of lightning. but atn is no picnic either. i was good for the motor cortex surgery which interrupts pain signal to brain, not a cure but it met all my goals of less pain, less meds and more function. the ;weather is a huge trigger also stress cold air, wind, chewing, sneezing coughing and many other things i use to do normally. so bigger facility more options for treatment. if anyone would like my drs information please let me know. he is incredible. local really good neuro manages my medication and i see dr. in chicago once a year to check on system etc.
blessings for pain free days
jady

Yes! my eye hurts almost all the time and once the lightening pain starts up (usually in he evenings for me) sometimes the vision in my left eye goes a little weird.

Best of luck with everthing!

Thanks y'all for the info! Heat helps me too....on really bad days my heating pad is my best friend.

I was just diagnosed today. Two years ago, it started but lasted a total of a month, and now it is back. Numbness on the right side of my face, the corner of my right eye hurts, the corner of my mouth hurts (right) and I have shooting pain up the BACK of my head. Two years ago, the shooting pain was in my face. Both episodes have been right before my boyfriend was about to leave for deployment. I thought I was about to break out in shingles. Not sure if i wouldn't rather take the shingles after reading some of the posts! I am not in a lot of pain.. just feels numb and prickly like my foot trying to wake up.

I have shingles of the scalp and bought a $3.99 eye patch from Walgreens. As odd as it sounds, the pain all over my right side of the head is reduced or completely eliminated with the eye patch! If it's a placebo effect, I'll take it.

Another thing that works 100% is a baggie of cold water on the place that hurts. It's hard to keep on the head if you have to move around or work. It doesn't have to be on all the time, though.

Good luck, people. There is strength in numbers and the support group.

This is me today thank u for your answers, I was scare had a sharp pain in back of my left side and my eye hurt very much,

Hi, I can totally relate. My ATN pain involves my right eye and right forejead and part of my scalp. My ATN was caused by a craniotomy from 3 years ago. I was only diagnosed 3 weeks ago. I saw neurologists and pain mgmt docs who said that it was either a miagraine or there was nothing wrong. My incision for the craniotomy was through my eyelid and they removed and replaced a piece of bonefrom my orbital bone up to my scalp and to my temple area. I had complications with it. About a month after the surgery I got an infectiob that required another surgery to clean out the infection. That's when my pain started. I was put on Neurontin which didn't help much and had nerve blocks. I finally went back to the two original neurosurgeons a few weeks ago for an over due check up and that's when they diagnosed me. I was offered supraorbital nerve decompression surgery which I opted for after trying Tegretol with no success. It made me vomit. The pain got so bad two weeks ago that I contemplated taking a bottle of oxycodone. I wanted to eithet chop my head off or die. When my husband came home from work, I told him to take me to the ER because I was in so much pain that I was't thinking straight. When we got to the hospital the gave me IV pain meds and called my neurosurgeon. He put me on the surgery schedule for 9/25. The surgery took 2.5 hours. I woke up feeling better than when I got there. He did use marcaine to help with pain. He said that I had tons of scar tissue and extra bone that were removed. My pain is not bad at all and the pain pills work when I need them. I saw the surgeon yesterday, he's optimistic, but it could take up to 8 months for the nerve to wake up. Right now it's a waiting game, and I have the worst black eye ever, but I'll take it for the chance of being in less pain or pain free. I know surgery is a last resort. I chose to have it because I'm 31 and my husband and I despertly want to have children. We were planning on it when I was diagnosed with the brain mass, but put our plans for a family on hold. I pray that this surgery works. I feel for all of you that have any form of TN. I hope alk of you find treatments that work for your individual situation. Good luck and God Bless.