There are two types of TN. Type 1 is the attacks that come and go. Type 2 (Atypical) is a constant, burning pain. I have done a lot of reading and a lot of research about TN. Many doctors will not DX if you do not show the normal, classic Type 1 symptoms. But Atypical TN (Type 2) is what you describe. The thing about it is that it can get better and go away but it may come back, and worse. Also with my experience my pain started out very localized, to one tooth, and over a year it spread through other teeth and into my jaw, cheek and ear.
I have had ATN for about eight years. My first attack was smack, dap in between two bottom teeth. Constant, burning, vibrating pain all day, every day! I saw many doctors, dentists and specialists. Begged them to pull teeth out. I was diagnosed with TMJ and was taking pain pills like there was no tomorrow. Finally my doctor told me to try Amitriptyline. I was put on 25 mgs and all of the pain went away. I stayed on it for two years and went off of it when I wanted to get pregnant. The pain never returned. Until early last year. It started on a back, bottom molar. I was in the dentist office about eight times. Antibiotics, pain pills and an unnecessary root canal later I finally came to the realization that it was TN again. Went on Amitriptyline and 40mgs is where it stopped hurting. About two months ago I tried to decrease to 30 mgs and the pain came back. So I went back to 40 mgs and all is good again. My dosage is low but it different for everyone and I thank the lord that I am fortunate enough to have found something that works!!
Everyone responds differently to these meds. And sometimes the side effects are too much. I was very careful to up the dose slowly and it took a long time for it to start working. I think going from 10mgs to 50mgs immediately is a lot. I also think it is wise to increase slowly so that you know what level is working. Sometimes TN can progress and meds can stop working so it is good to be able to increase it later if needed. The fatigue was a lot for me too. I am 37, a single mom, with two jobs. It was difficult. I am glad I stuck it out though because now I am pain free.
There are other meds to try. And meds that work for Type 1 TN are not necessarily the same ones that will work for Type 2.
There is a very good website.
www.livingwithtn.org It is the largest community of TN sufferers I have found. You will read people's stories that are very similar to yours and there is wealth of organized information about symptoms, medical help and medications on that site. I urge you to join and post in the discussions. The moderators on that site know more than any doctor you will probably ever meet.
I am not a specialist by any means. I know how frustrating it is to have doctors and dentists just stare at you like you are completely nuts. TN actually runs in my family so I do know more about it then most.
Being active, eating properly, keeping stress low and sleeping well are all extremely important and beneficial. Even if you do not have TN the neuropathy you do have would probably be treated in the same way as Type 2 TN.
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Originally Posted by wombat42
Hi thanks. The consultant said it wasnt TN as the pain was constant, wasnt worse in the morning, was only at one location. The consultant prescribed just 10mg amitryptaline for three months. I did reading up on the internet found out that amytryptaline was 1 of four first line drugs (here in the UK) the other 3 are duloxetine, gabapentin & pregabalin. They all have side effects and help around 30%. Everything i read said that the dose should be titrated to as high a level as possible. Medscape actually suggests that 150mg is a typical dose to go up to.
I spent about 9 days on 10mg, I went to my GP and asked for higher doses. I tried 30mg and felt no effect. I then went straight to 50mg and it zonked me out badly, gong to bed early and feeling drowsy during the day. After about 10 days still on 50mpg I felt absolutely just as bad so i gave up, partly because i thought i was obliged to keep pushing up to as high a dose as possible. Amitryptaline only helps about 30% of people and i thought at a low dose the success rate would be even less.
Another strategy i was trying to do was to get as fit as possible by going to the gym which should help me sleep better and therefore tolerate the pain better during the day even if it remained. The amytryptaline completely undermined that, it made me groggy just couldnt make it to the gym and i felt worse than i did before even with the pain affecting my sleep.
At present im back to trying to get fit again and taking food supplements Benfotiamine and R-Lipoic Acid which do help some people (maybe around 30%) as many helped by amytryptaline. At least they dont have side effects. Other options are cannabis or acupuncture.
A few years ahead, if you can wait that long there may be better drugs for NP on the market.
At some point in a few months if the food supplements and maybe acupuncture dont work i was thinking of trying duloxetine, gabapentin & pregabalin which have different side effects to amytryptaline. But your experience with amytryptaline suggests that even 40mg may have been helpful to me so ill consider trying that as well. Amazingly some patients taking amytryptaline for depression can be given daily doses of 300mg !
My pain level is medium, it isnt that terrible but all the same id like to get rid of it. If i was a superfit musclebound guy (something ill never be) id probably just ignore it as minor. I certainly wouldnt like this pain with me when im old and grey.
Are you going to try stop taking amytryptaline anytime ? Were you tempted to push to go for a higher dose?
Yes incredible ignorance amongst dental profession. Original dentist just threw me out when i suggested nerve damage, I saw an expensive private endodontist as i though root canal treatment was worth trying - afterwards when he didnt work he tried to refer me to someone called a "dental psychologist" !. That rather threw me off the nerve damage scent as I just couldnt believe at the time that a top expert in his field could get it so wrong.
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