I'm not sure my diagnosis fits...Looking for similar symptoms?

I have TN also with my symtoms i have pain in left side... temple , ear, jaw, cheek, gland, and sometimes down chest.. i also have pain in side of my tongue, i have a burning numb sensation ..people say it lasts minutes but sometimes mine last a hour or so.. i take Gabapentin, Paracetamol, Ibuprofen, Dihydrocodeine etc.. my doc has sent me to an oral surgeon to which i,m going on 27th May.. she said they will give me an MRI , i cannot stand this pain its crippling, i have not been to work since February .. and dont feel i can until this pain has gone.. suggest going to see a specialist .. stand your ground , i feel your pain .. and good luck

Just read your posting , sounds very like TN alright. I have recently been through surgery to relieve the pain. In my case the pain was in the lower and upper jaw and teeth but was very "electric" and came frequently but would subside after maybe 5 to 10 minutes. The surgery involved cutting the 5th Nerve as the surgeon was unable to pinpoint the precise location of the problem. While the pain is now gone the after effects are quite dramatic and include "dry eye", soreness around one side of the mouth, numbness on left side of face and in mouth and tongue and reduced taste.

I do not wish to put you off surgery but I believe you should be aware of the likely after effects and do not rush in to anything. Also get a few opinions before deciding what to do.

hi 

sounds like you have most of the same symptons as I have, although I do have the shock pain as well.  I am having a really hard time with the medications, I am only taking 100mg of carbamazepine, down from 300 mg per day. I really isnt enough to do much.  I have to take ativan each day as well.  I have been sick since jan 29th, and have yet to see a neurologist, on a ridiculously long waiting list.   I have seen a dentist, ENT, 3 General practioners and a pain specialist, all say TN 1 and TN2 ( atypical facial pain).  I would like to know how you or anyone else carry on any type of daily routine or work or anything much for that matter.  I have not been able to work, dont do much around the house because of either pain or intolerance to the medications. Life as I knew it doesnt reallly exist now with TN, how do we  get through it.

 

Thank you both for your reply. It is a very scary thing. I've been scouring the internet for information, some of it lines up with my symptoms and other stuff is way off. The electric pain that people describe sounds horrid. Sometimes I'm left for a few hours huddled with a heat pack against my face because it's the only thing that takes the edge off the burning ache in my face, but I would take that any day then the electric shocks.

I'm blessed that my workplace is very understanding, even though they've got far less understanding on what in going through than what I'm starting to grasp the details of. Sometimes I get a few strange looks, like when I'm trying to attach a heat pack to the side of my face so I can continue typing, or when it gets too much and I curl up in a ball in the green room lounge. I think there are a few people that think I'm exaggerating, but I don't really care. If the situation was reversed, I might have thought the person was exaggerating too. There is, after all, nothing to see. Cindy, after everything I've read on the internet about this condition, I'm going to try any solution that comes my way, and I'm going to trust that God will somehow get me through it. I've been through emotional and mental trauma and God's pulled me out of it all and dusted me off, good as new. I have every faith he can do the same with this. Mind you, the physical seems like an entirely different kettle of fish, the pain; it's tangible. Something that really does seem like a big brick wall in front of you (or possibly crushing you).  But to God it's not. I don't know if you believe in God, but when someone makes such a hopeless statement, it's the only response I've got. He is hope to the hopeless

Just come back from the oral surgeon, What a load of crock i,m so upset.. he said i might have a facial sprain???? WHAT for 4 months.. all my symptoms are TN .. he said i might have to have some teeth removed .. but he cant explain the pain in my temple , tongue, upper jaw etc?? I,m going back to my GP to see if she can send me to someone who knows what they,re talking about.. so fed up... and after all his tugging about i,ve now got the chronic pain in which i took tablets before hand to get rid of.. got to wait 2 hours now before i can take more!!!. #hadenough!!

Also would like to say .. my GP is so understanding and just rang her .. she is sending me to a neurologist.. also the oral surgeon never sent me for an MRI or anything!

I'm sorry Debbie, I hope the neurologist gets to the bottom of this for you. I just got a referral from my GP for a neurologist - he said that would likely mean an MRI - , but he says the waiting period is a long time. We've increased my Carbamazepine to 800mg to see if that makes a difference. 

Hi, I have TN for over 10 years. At first I didn't know what it was just like you all. At first the pain wasn't too bad. It was like a toothache but it comes and goes and never did stay long enough for me to worry. After about 3 years of that it finally came and stayed and the pain got worse and worse. It was then I was diagnosed with TN. I do have the electric shock pain. I have been on 5 or 6 different medications. I am currently taken Trileptal 300 mg twice a day. Sometime the pain is so bad I take it 3 times a day. For the past two weeks my face has been electrocuted by this horrific pain for 30 minutes to over an hour on every attack. I know of one lady who also has TN. She told me she has been pain free for the past 14 months by taking her medication along with applying Capsaicin cream .1%. I went and bought the cream and applied it on yesterday. I did not have a flare up except one time and during that time it only lasted about 10 minutes vs over 30 minutes before. This morning while brushing my teeth I had another flare up. I put on Capsaicin cream and the pain stop after 5 minutes and I have not had another flare up for today. I am applying the cream 3 times a day and continue to take my medication. It seems to work for me. If you decide to use Capsaicin please read the instruction. This cream is very very hot and will burn your skin if you use too much. The cream comes with a .025%, .075% or .1% potency. I decided to use the highest potency of .1% because my pain was very intense of electric shock to my face. Please use tissue paper to apply and do not get it in your eye. I can't say enough how this cream has helped me the past two days. I hope it will help you too.  Good luck!!!

Hi, it's sound just like TN 2, I have been experiencing the same things for last 9 months and currently off work with exhaustion from it. It is a horrible debilitating disease and hard to explain to others who do not experience it. Already this forum has helped me knowing I am not alone.

i have tried Gabapentin which made me feel unwell and didn't help the pain, now on Amytripiline which I am not holding out hope for.  I have been advised that Acupuncture can prove helpful in some cases, which if am going to try, so will keep you posted.

 

Have just come back from my second hospital appointment.. i see a lovely consultant, he says i have Great Cell Arteritis, and TMJ.. I have got to go back Monday to have a biopsy .. bit nervous .. this is being done asap as i could loose the eyesight in one of my eyes if this is left untreated... why didnt anyone listen to my symptoms before, but i suppose they had to rule everything out!! all the symptoms did resemble TN they are practically the same ...the treatment for what i have will be long term steroids i was told .. we will have to see.