Has anyone had pain in there tongue ??

Hi There

I have had TGN for five years and have recently developed pain in the roof of my mouth and in the back of my tongue - it is really painful when eating but not heard of many others with this although the maxillary branch nerve does sit over the top of your mouth so i presume that is what is causing it

good luck with any treatments

Hi, I have been diagnosed with this terrible disease, I suffer with lots of tongue pain and pain in the roof of my mouth as well as the usual ear, temple, eye, cheek and other areas that it affects, I think the tongue pain is about the worse as I seem to have no feeling sometimes in it and therefore cannot tell when things are too hot. I am on medication for it which has helped but has not as yet taken it away and I don't think I have had a pain free day in the two months I have been suffering from it, I am sure my husband thinks I am exagerating the illness but I just cant describe how this pain feels, it seems to have taken over my life and left me so depressed, I have gone from an healthy 56 year old, working full time with a very active family life to an old woman only managing to work part time and not coping very well, to every one who is suffering with this you have my sympathy I know what you are going through, I don't know how people have coped for years I have had it 2 months and am at my wits end just not being able to see any sort of light at the end of the tunnel,

Hi Smf,

I too suffer the same painful experience mainly in my lower jaw , tongue and by my ear, along with the whole miriad of others starting to creep into the maxilliary branch it is now becoming difficult to even blow my nose !!!. I have just had to change tablets and my goodness had I forgotten how bad TN can be, I feel your pain trying to eat, talk, brush teeth, just move your tongue in general brings such fear of potential pain.  I was on 600mg per day of carbamezapine and pain started again, so doc said to change rather than increase dose... well all I can say is BIG MISTAKE.... I am on my 2nd lot, tried Topomax, they made me feel very low, and now I am on Lyrica, having to start on the lowest dose(75mg am/pm) as this is all the doc would prescribe...  If only they knew how it felt!!!!. Like you i think people don't bel;ive me when I try yo tell them how bad it feels,  I have now started asking " Have you ever accidently electricuted yourself?" when they say yes 9 as most people seem to do.. I then say... " well imagine not been abel to take your hand away to stop the pain!!!!  .. I hope you can find some peace, remember all on here know the pain you feel as we all feel something just like yours.. keep smiling ( providing thats not one of your triggers )

Hi smf.  I have had TN for 18 months I have pains in teeth, jaw, gums and tongue when in tongue it often feels like it's burnt.  I agree talking, drinking, swallowing and eating is almost impossible.  I ended up in hospital last year on a drip with dehydration as I could not swallow.  I have found that milk is the only thing I can manage and that seems to help.  Join the TN society they will send you leaflets that you can show your friends.  TN has another name - The Suicide Disease!

I also have MS which is not very compatable with the drugs.  Do see a neurologist

and try different drugs.  Good luck

I was diagnosed beginning of February,It came on just like that, i went to the dentist thinking tooth out and no more pain, if only, my Dentist said teeth all ok ,then i asked him if it was my wisdom tooth as its growing sideways, he said again all ok, he told my to go to doc,s and she said i have this i have pain in left side this includes Temple, ear, cheek up and lower, eye, glands and slightly going down to my chest?.I clench my teeth alot so i dont know if this started it, The tongue is a bad one it feels like a badly pulled muscles and teeth are really sensetive.. i have been on Amitrptyline,also Tegratol now on Gabapentin.. i also take paracetamol , dihydrocodiene, ibrufen etc ... i am so down.. as like others , i can see no light at the end of the tunnel.. i have a hospital app to see a oral surgeon and my GP said they will give me an MRI etc.. i barely brush my teeth which i hate and when i do i cant use my mouthwash as it causes severe pain, i have practically given up eating as i,m too scared too, i live on energy milkshakes.. i feel for all the people on here who have it. I hope we can all get sorted from this terrible illness xx

I have had TN for 2.5 years. It started in my tongue, almost like a really bad Charlie horse... Or like stabbing. Sometimes it's just cramping. 

My other symptoms include buzzing on the upper lip and nose tip plus pain and headaches surrounding my right eye. The tongue pain is by far the worst. On top of that, the last two times I've needed dental work done, it has been awful as the vibrations irritate the nerves andade me feel like I'm not numb at all.

I've got Atypical TN and my second big "flare up" (which lasted about 7 hrs) was in my jaw/tongue, i was unable to eat for over 24hrs and ever since, i find if my food requires too much chewing the pressure builds up again in my jaw and tongue and all the muscles involved just feel weak and exhausted. Luckily my pain is mostly just the crushing/cramping variety ( that lasts for hours ), with only a couple of instances of TN's stabbing shock-like pains (boy were they an eye opener!)

I have had TN for 3 years, and the sore tongue is one of the worst symptoms. I describe the paint his way: it feels like I bit down on it real hard...ouch!