Hello all, when you are experiencing a paticularly bad day do you find that your pain moves around your face or remain in one location? I suffer from Type 1 and Type 2, on the right side all 3 branches. On my worst days I can litterally track the pain around my face, it almost feels like there is something under my skin.
I can follow it from my scalp, just around my hair line, around my eye, cheek bone, ear, temple, jaw, lips, nose, it will hop from tooth to tooth, top and bottom, all the way to the centre tooth and then start back the other way again.
Its such a horrible unpredictable condition that seems to effect everyone differently.
One of my doctors was telling me I do not have TN as there was nothing on my scan and Im 32 and male so I dont fit the normal criteria for TN sufferers, my neurolgist is pretty adamant that I do have it.
Its so frustrating, I am constantly doubting myself, hoping that there has been a mistake somewhere and that I dont have it after all, maybe its just an infected tooth, that hasnt been shifted by 3 lots of antibiotics, and isnt effected by any form of pain killers, even morphine, and has lasted for 7 months, constant, without a break. Its probably not an infected tooth!
I felt it originally as a specific place on a molar. After 2 un needed root canals on healthy molars my dentist said he remembered something called tic doloreux. I stopped seeing him and started trileptal which worked. It came back a few years later. The max dose of trileptal was ineffective after the next few episodes. It became less localized it started roving. My whole left jaw then was in unbearable pain which included my scalp on the left side. It also roved from all left branches. I am in a rehab center now for a MS “exacerbation”, which I felt was due to not being able to eat. They are giving a double dose of Lyrica and 600 mg of Trileptal with opiates for break through pain. People keep suggesting surgery. I can’t convince people it does not stay localized and they can’t kill every branch of my nerve.
I was recently diagnosed ( 3 weeks ago) with TN. I know exactly where my pain starts. I can show you the exact spot. The culprit is slightly to the right of my right nostril on my top lip. It never stops pounding/throbbing. Never takes a vacation. When the weather changes/ get cooler or it rains I will start having radiating pain that shoots up to my right eye and causes my vision to blur in both eyes. My chin will drop to my chest and I will "twitch" to the left. I know what is going on around me but can't speak when this happens. It's not a seizure, more like a bolt of electricity and I feel that I'm going to die. I feel my brain jump every time I twitch. My head doesn't always drop. I have minis that causes my left top lip and around my lift side of my nose to twitch. Sometimes I will get a jolt and my eyes will close and water. It's a burning electric-shock kinda thing just doesn't go to my brain. I know that may sound weird but that's the only way I know how to describe it. If I take 1500 mg of antibiotics or more a day on the third day a majority of my symptoms will diminish even my droopy right top lip will almost fade. Talking, eating, sneezing, coughing, brushing my teeth, washing my face, putting on makeup, weather change - basically a drop in the barometric pressure only-, and the cold wind will set these twitches/ electric shocks off. I actually videoed an episode this morning while it was raining. It was a medium episode.
I have been dealing with this for over a year now and I still sometimes try to convince myself that it could be a tooth, even though my pain now is far more than just teeth. And my pain is always on the move. I am affected in the bottom two branches. Its patterns are the same and it comes in flair ups.
I'm sorry you are going through this. The pain is incessant and exhausting. Most of us don't fit any mold so it is even more frustrating to be given so few answers and options.
I have had typical TN on and off for nearly ten years, and the pain has always been in the same general area - my right cheek.
I suffer the constant ache/pain of TN type 2 and the electric shocks of TN type 1, this is on both sides on all 3 branches.
I have had unnecessary tooth extractions due to TN pain which I find the most upsetting. I still have phantom pain where the teeth were, I feel it moving along from tooth to tooth back and forth (I hate it).
I can feel the pain move up around my eye which makes me want to close my eye, it continues to my forehead which stays as a constant headache at the front of my head.
I can experience type 2 pain on one side and have type 1 pain happening on the other side at the same time. I can also get type 2 pain and type 1 pain on same side at same time.
If pain was a liquid, I once felt all the pain drain from my left side and fill-up on my right side. It was like pouring water from one jug to another (ever since then I have always suffered pain on both sides).
I always had dental problems as a child, over-crowding, early fillings, back and forth to the dentist etc. Root canal work in my early twenties and then full blown TN in my thirties, you would think I would be use to facial pain by now as I have suffered facial pain all my life you could say.
I am tiered of it all, now age 41.
I have had TN for over 20 years in second branch. All of a sudden it has moved to the third branch. What used to work as far as meds go, doesn’t want to work with this new pain. Has anyone had that happen to them?
Yes, yes and yes! The pain moves around. Reminds me of the whack-a-mole game. I never know where its going to be and when.
On top of it, I go through the same “denial”…even though it’s been 3 months, 3 dentists, two neurologists, a primary care doc, ENT and endodontist. I still cant help but wonder if “it’s just that one tooth and the pain radiates”. Yeah.