Am I odd in that touch does not tend to provoke my TN? Cold air and fans will irritate and cause a flare if I do not remove myself from that situation but I see so many are affected by touch, eating, speaking etc. I have not experienced that myself. I can't be the only one?
No Cherry you are not. Mine was greatly triggered by cold, fans. I had to wrap my head in a scarf to even stand going outside. Hope that gives you some comfort. 
Betty do you also have sensitivity to touch as well though? I don't have that, I'm wondering if that's odd? Thank you for the reply :)
Hi Cherri, No two people are alike with this disease. There is also classic TN and type2 TN. Some days I can't bear to touch the right side of my face, other days I can but then a gust of cold air or loud noise will trigger instant pain. Some days I can talk quite a bit and then other days barely utter a word because it's too painful. That's only my experience, but like I said, it affects everyone so differently. I think we all can learn so much from each other here.
Thank you Obsidan, I don't know what I would do if noise set this off. I have 4 Dachshunds and a GSD and if a mouse farts in my yard they all bark, always right next to me too lol I cannot imagine if sound set it off, ugh. I can touch my face all I want and actually I will often sit and smack my face when it hurts (thinking it will trick the nerves) sometimes it helps. Thinking on it yes, if I talk too much it can act up. I think many of us may subconsciously avoid situations that set it off without even realizing we are doing it. I avoid many family social events, being outside and very cold food or drink. I also loathe the ceiling fan above my bed. My other half is hot blooded and is always hot, and always turning it on and on high. I am constantly turning it off lol It goes on and off all night, like a passive aggressive battle.
Yes. My husband loves to touch my face and if he would I would jump. It really made me feel bad. And I couldn’t drink straight from a cup or anything. I had to have a straw to drink. I couldn’t stand anything cold touching my right side. It really impacted everything I did. I decided to have the surgery. Had it Feb 3rd this year. Still recovering. It’s not been easy but at least I’m not worried about the pain all the time.
I have constant TN2 pain but also have TN1 stabs which seem to come out of nowhere with no specific trigger. I am not sensitive to touch or temperature. I find that pressure, like laying on the affected side, does increase my pain somewhat but light touch, does not seem to cause a flare the way others describe. Eating and speaking also do not cause spikes in pain for me. It would almost make more sense if they did because I get spikes in pain for seemingly no explainable reason.
Thank you Betty and Hope Seeker (love that name) I'm just sitting here now crying... I probably also have GN but I had never heard of it and was just told about it, it explains a lot. I am just beside myself as to why and how this is happening. Both of these appeared at the same time and the throat/tongue stuff is really awful :( When they kick off together is when I am running to the ER. I did not know the stuff in my tongue and in my mouth and throat could be something separate...Hubby just called and I was crying so he asked what was wrong and I told him. He was supportive and alarmed and wants me to find another neurologist that understands this more in depth :(
I don't seem to be bothered by touch either, in fact I like to hold my face...and it feels good to lay on that side when I go to bed.....I have discovered in the last 2 days that humming to music sets it off (which is sad because I'm known for my humming when I'm happy!), and using my sonic care toothbrush sets it off, and washing my hair. I'm new to this affliction so I'm still figuring triggers out. My husband is afraid to touch me!!! Jeez.....BTW I have atypical TN, constant pain, aching, with flares that send me to my knees, worms in my teeth, burning, pressure, feels like there is a lump in my jaw but there's not, ice pick jabs etc...yucky stuff....
Hi Turtle, YES! I also rub my face, especially that spot in front of my ear where it feels like the nerve comes from. I do that a lot without realizing it but it seems to help. When this first appeared I was putting a heat pad on it like crazy, I thought it was a toothache. My teeth are all very bad due to medication over the last 7 years :( It was easy to assume it was my teeth. I am so grateful for the ER doctor who did notice something just was not right with my "toothache." My only triggers so far are cold and wind/air moving.
Cherri~ Me too cold, wind/air moving, and if the bass is up to much on the radio, or like at a concert, those are the biggest triggers. Eating talking aren't triggers. Unfortunately this played against me in a court room when an "expert" said those were not triggers since touch had to be one. Again I come here and am vindicated. blessings~~
That's terrible shepherdgirl, about the court case. What kind of TN "expert" would not recognize cold air and moving air as triggers?? Oh, your screen name, is that because you have German Shepherds?
shepherdgirl said:
Cherri~ Me too cold, wind/air moving, and if the bass is up to much on the radio, or like at a concert, those are the biggest triggers. Eating talking aren't triggers. Unfortunately this played against me in a court room when an "expert" said those were not triggers since touch had to be one. Again I come here and am vindicated. blessings~~
Luckily I work for a hospital so I have a little bit more knowledge of how things work, by the way you can request a second option or request another doc within the practice. My neurologists here is great he just takes a while to get an appt. Bit the times I have had to go to the ER they have been wonderful. Good luck getting diagnosed and finding a good doctor. Good luck!
Mine is set off by wind and air pressure changes!! Touch doesn't bother it at all. I sometimes don't even realize it's hurting until my hubby asks why I'm constantly rubbing and massaging my face!! I'm always rubbing around my ear and down my neck! Mine is also set off by my power tooth brush, I have to go back to the manual for a while. And yes, humming too set it off which really sucks because I used to hum my 4 yr old and 2 yr old to sleep. But no more. Thankfully, my eldest two have taken over and will sing the girls to sleep! I don't know what I'd do without them! I've finally been able to get me an appt with a doctor in Dallas, so hopefully I'll get relief soon!
Hi Cherri,
My ATN is not set of by touch either. I have certainly learnt this winter that cold and barometric pressure worsen my symptoms. I have learnt that if I am stressed out or have anxiety my symptoms quickly spike. I think this is blood pressure. I'm sure that talking and eating sometimes set things off.
I’m not effected too much by touch either. Everyone’s trigger are different tho. I’m effected by extremes of temperature, brought light, loud noise, talking for long periods or loud bursts. Everyone is different Cherri. The longer I suffer I see every case is different. Sending love back to u Helen xx
Hi Cherri
Nothing seems to aggravate my TN! It just loves me so much, it never wants to leave me!! I do lie...if I find myself getting a bit stressed out at work, I can feel the pain moving up the scale a little. I can always eat, drink, brush my teeth etc. That's probably why it's such a hard ailment to treat as it's not a 'one size fits all'!!
Take Care
Lynn
Hi Cherri! I have been diagnosed with Geniculate Neuralgia and a very very rare form of it as well. Only 15 others worldwide documented...I'm # 16. My nerve actually has scars from my shingles case. They can be visualized by MRI. I can pull, tug, push, anything to my ear...nothing triggers pain except cold and wind and I have a massive collection of both winter and summer hats that come down over my ears to protect them. I have pain control by medication but still have episodes of breakthrough pain and have to medicate that away as well. My Geniculate Neuralgia is non-stop ice pick jabs to what feels like my eardrum but my ear has no sensory pain. I have had Gamma Knife surgery, steroid nerve blocks, P-Stim implants...6 of them. and my pain is still the same as when I first came down with it, 3 days prior to getting the shingles on my left leg. There is something strange that I do to get relief while I wait for my meds to kick in...I stick my finger in my ear, or press on the outside and sometimes just behind the lobe area. It helps back the pain off...I used to run around with my finger in my ear non-stop before I got any treatment. All I'm doing is applying pressure. I had one md theorize that the brain can only respond to one extreme at a time so what I do is like tricking the brain...I'm not so sure it's all that but it does help...ALOT.
Hope something I've written has value to your case. I would be so happy to answer any ??'s you might have or just shoot the proverbial breeze...anytime!
Be sweet to yourself!
Always~Laurel aka shinglesdidit :)
Cherri said:
Thank you Betty and Hope Seeker (love that name) I'm just sitting here now crying... I probably also have GN but I had never heard of it and was just told about it, it explains a lot. I am just beside myself as to why and how this is happening. Both of these appeared at the same time and the throat/tongue stuff is really awful :( When they kick off together is when I am running to the ER. I did not know the stuff in my tongue and in my mouth and throat could be something separate...Hubby just called and I was crying so he asked what was wrong and I told him. He was supportive and alarmed and wants me to find another neurologist that understands this more in depth :(
Wow laurel that’s amazing. I get dreadful ear pain too. My case is very complex though. Lots of pain triggers. Thanks for sharing x
Wow! So many replies today! Thank you all soooo much, we all know how important it is to have people that understand what we are all going through. Ugh my internet is lagging this morning, driving me nuts. I think one of the reasons we tend to have problems in the ER is because of our varied symptoms. If they see one person and learn about it and then see another and we don't match it confuses them apparently. Laurel! I do that with my ear as well, rub it right behind my lobe in that little soft recess. The pain I get in my tongue and throat etc is just nasty, really nasty. I see others on another thread describing tingling and annoyance, mine is not that at all it's like jacked up TN, deeeeep in the muscles and ear. I can't explain it. I hate these terms used as I don't know how to label my pain. Stabbing, burning, aching? I don't know. It hurts, that's what I know. I really want to explore this glassopharengyl neuro thing... I really think I have both of them. How do you approach your doctors though, they hate it when people self diagnose etc I must admit that my docs have really been treating this like a bruised elbow though...., I don't feel I am taken seriously enough :( Thank you all for comments. I will try and respond to them all once my wifi decides to behave.