Hi, I have just been told I have TN. It started in December when I had very bad pain in my left upper teeth for a week. I went to the dentist who did an x-ray and said there was nothing wrong, must be a sinus infection and gave me antibiotics. I did not take the antibiotics as the pain went away by itself. Then on 16th March the pain came back. I recognised it straight away so this time I went to the doctor who put me on antibiotics for a sinus infection, she also gave me tramadol and ibruprofen which did nothing for the pain. After seven days on the antibiotics with no difference I was sent to ENT who put a camera in my nose and said my sinus's were clear and that there was no reason for the pain. They told me it was TN and to go see a neurologist. My doctor is trying to get me an appointment next week as I have lost 8lbs in weight due to not being able to eat.
After that long winded history, my question is, the pain seems to have eased. I can now drink luke warm drinks and eat, it's only very hot or very cold that triggers the pain now. I know very little about this. Do you get bad days and good days? Do you get periods of relief from it? Should I still go and see the neurologist if it seems like it is getting better on it's own?
Any advice would be appreciated, thank you

Sorry you are dealing with this.

I have Atypical Trigeminal Neuralgia that started out as tooth pain last year. Yes it comes and goes. It can even go into remission. If your pain disappears completely there isn't anything to treat at the moment. Likely, it will stay with you, come back and it can get worse.

So, yes see a neurologist. You need to have an MRI to rule out other causes such as MS or a tumour. And you need to be put on medication. TN typically does NOT respond to any type of pain reliever and is mostly diagnosed when a nerve medication works to relieve the pain. Typical medications to start are Tegretol or Neurontin. For Type 2 or Atypical TN (which it sounds like you have) often Amitriptyline or Lyrica work as well

I didn't have any luck at all until I went to a neurologist. We tried many medications, before figuring out what is helpful. I took two MRIs and a MRA. A neurologist with some experience in TN and/or ATN, who is intelligent and kind, is your best bet. I am very fortunate to have found such a doctor. Wishing you well.

Thank you for getting back to me. There is a lot of information about this online but it's hard to find the answers to the questions I have. I am 38 years old so I am worried that there may be an underlying reason why I have it. Does anyone know if it is heriditory as my maternal grandmother had it? And can anyone tell me what is the difference between T1 and T2? Hard to decipher all the mumbo jumbo about it.
Thank you so much for your help.

Age is not a factor. It is common believe that this is an affliction that commonly affects older ladies. I had my first attack of Type 2 TN when I was 29. I have been dealing with this for awhile-I am now 37-and have done tons of reading. I often see people in their 20's with symptoms.

It is rarely hereditary. I think I have only come across two other people that have a relative with it. I am the forth person in my family to have TN, or to have symptoms of it anyways. All on my maternal side. There is actually a study being done at the University of Toronto on Heredity and TN. I am participating in that study.

Type 1 TN is described as lightening bolt shocks that come on as fast as they go. It may be many of them in a row but they do leave.

Type 2 is described as a constant, throbbing, deep and borring pain.

If have Type 2 but I also have symptoms of Type 1. Everyone's experience with TN is very different. It can affect different areas of your face and your pain patterns may be different than the next person's.

Feel free to ask anything and I hope that this helps you

I just wanted to add with Type 2 people are often pain free in the morning. It starts coming on sometime mid morning and increases through the day. Not everyone follows this pattern but many do.

My pain started in a tooth. It worsens over time and started moving into neighboring teeth. A couple of months later it was in my jaw, cheek and ear. It is something that you do want to take seriously. Have an MRI and see a neuro.

Thank you so much for all of that information.

Mine does sound more like T2. It definitely worsens throughout the day. If anything cold or hot goes anywhere near the left side of my mouth I get the pain that starts off as a throbbing across all of my teeth then gets worse and worse until it is a searing pain all across my top teeth, back of my jaw, lower teeth and into my cheek. It lasts for a couple of minutes and I have to stop what I am doing until it eases. When it eases there is still pain there for about five minutes but it's more bearable. Cold air starts it off too. I was getting it during the night if I lay in certain positions.

I will look up that website, thank you for the info