I have had toothache since February and doc has suggested it may be Trigeminal Neuralgia?!

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Hi there, I am looking for some advice.

I will keep this as short as possible. I had toothache in February and the dentist was not able to ascertain the problem. Nothing obvious showed on x-rays. Got root canal done, pain did not go away, got tooth extracted - took dry socket - excruciating pain. Left things for 6 weeks but I was still in pain. Only one molar left on bottom left hand side so eventually opted for root canal on this - again nothing showing on x ray but definitely signs of sensitivity.Anyway, this has made no difference.

Been to the doctor who suggested I have Trigeminal Neuralgia. I googled this straight away and I am a little baffled. I do not have severe pain - never have done (apart from dry socket) but I have a constant ache. It is not agony but it never goes away. It really is getting me down and I don't know where to turn. It is on the left hand side of my face - along my lower jaw. Can anyone help? Can this be a form of Trigeminal Neuralgia? He has prescribed 10 mg Amitriptyline and I have to increase to 20 mg next week and go back for a review. So far, no difference but I am totally wiped out. I would appreciate anyone's advice! I am DESPERATE and want my life back!! It would be good to know that I am possibly on the right track with this! Thanks.

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  • Posted

    I can only only tell you what my experience of TN is - I'm not an expert by any means but I've come out the other end of it and am now pain free. Thankfully!

    My TN pains were mostly of the severe, electric shock like pains, that are most commonly experienced with TN, but I also experienced this other type of constant ache at one time that you've described - almost a burning sensation. How would you describe the pain exactly?

    From what I know, it is usually diagnosed properly as TN when a drug such as the one you have been prescribed, proves effective in relieving the pain. Unfortunately though, it can take very high doses of these drugs before any difference is noticed, so this could be a long trial and error process you are about to embark upon, to see whether this particular drug works for you. If it doesn't, you may be put on a drug such as carbamazepine, gabapentin or other anti-seizure drugs used predominantly for epilepsy, to see if they help. (These are the drugs used for TN)

    Your doc knows best I imagine so go with it for a while and you may be referred to a neurologist for further tests.

    Hope you start to get some relief soon.

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    • Posted

      Thank you for your reply it has been very useful and in particular the reference to the high dose! I am only on 10 mg and the doc did say to up it gradually. However, it is making me very lethargic but I am hoping that may settle. Thanks again.
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    • Posted

      Hmm, that's a very low dose. At one point whilst taking pregabalin, which worked very well for me, I was taking 4x 150mg tablets!! While on carbamazapine I worked right the way past the max dose of 1600mg to find a level that stopped the pain but everyone is different and I was told I was one of the worst cases he'd dealt with so stick with it. smile
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    • Posted

      Thank you. I am just worried that by upping the dose I am going to become even more lethargic. Did you notice a difference straight away. I have only been on the tablets for 5 days and the doc did say it can take weeks/months! AARRRRRRGGG! I am going to take 2 tomorrow though as he did say that the low dose only helps some people. Thankfully I don't seem to have a severe case like you - that sounds horrendous. Mine is just (not really just) a constant ache. Nothing flares it up or makes it any better/worse. I will stick with it!
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  • Posted

    Hi, this sounds so close to what I'm going through. It started off as just an ache in my upper jaw, no where else. It was a couple of weeks before it started moving around my mouth, only on the left, and now in my cheek and lips. Same story; dentist couldn't find any problems with my teeth. It was suggested that maybe it was my sinuses but the doctor ruled that out. 

    I really hope the pain doesn't start happening in other places for you, but if it does, maybe the diagnosis is correct. I'm still really unsure, mostly because I just want this ridiculous condition to go away, but it's starting to line up too well with Atypical/Type 2 Trigeminal Neuralgia Symptoms. The carbamazepine I'm really knocked me for six when I first started, but I'm starting to adjust and I don't feel as tired any more. I hope, if you do have trigeminal neuralgia, that you find a medication that is right for you and that it starts to get your life back on track soon.

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  • Posted


    I will have to catch up on the other messages but just happened to look at this one and thought I could try and help some how!

    Its hard to know where to start but with all the different things I've had going on for a long time now I feel like I've began to understand things a bit better.

    There is Typical Trigeminal Neuralgia and Atypical Neuralgia.It would probably be best to google these and then google neuropathic facial pain and I think you will find what you are looking for in the last part,neuropathic pain.

    You can have pain in your upper and/or lower jaw,it can cause referral pain so it feels like all your teeth etc are in pain but is usually caused by sometime only one tooth either infected or touching on a branch of the nerve for whatever reason,extremely sensitive teeth,a number of explanations.

    The pain can be there all the time,ease a little or dissapear for a while but will come back.

    Will it be the next time you clean your teeth or have the air conditioner on in tIhe car,or when you have your next meal?It always has a trigger of some sort.

    I wouldn't know any medical terms but I call it 'the chaser'.You can have a tooth removed and be pain free for a little while then you get it again somewhere else in your teeth.How many people have had their teeth removed because of this problem only to find they still get it somewhere else.

    Neuropathic pain will chase a week spot!It messes with your nerves and anyone that knows about this knows that painkillers do not work!!

    Unless your Dr is going to send you to a Neurologist,instead of the painkillers they give out as pacifiers ask them about the medication that intercepts the pain signals that travel the neuropathic path.I have had numerous meds,one more horrific then the next as far as side effects go,finally settled with the most tolerable which is Gabapentin.

    I still get bad tooth/jaw pain and ultra sensitive teeth.I have to have another root canal done.And all this is AFTER having Microvasclar decompression surgery(MVD) for Trigeminal Neuralgia.

    I think with the RIGHT medication and knowing what triggers your pain then you can take control more and not let this 'neuropathic chaser' get the better of you.

    Don't let it get to a stage that you get so desperate you go as far as I did.My surgery for TN messed my eyes up and I need a further two surgeries to try and correct that now!

    I would insist on having the TN main branch scanned and even though its not conclusive,it can give them a better idea about if you could have TN.I still say though I don't think you have.

    I wish you all the luck possible and hope you can see that you may not be able to cure what's going on but you can control it.

    All the Best Christina.


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    • Posted

      Hi, Christina. I found this post of yours and in many ways that describies the pain that I have been having. I am looking for a diagnosis still. But I wanted to ask you what you had? Atypical Neuralgia? Or neuropathic facial pain? Did you differentiate them in this post or did you mean they are the same? It was not quite clear from your post. Thanks.
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  • Posted

    I have had TN for some 13 years and have the atypical pains you endure.  I also have the full blown nerve pains.  I have had all the treatments ( MVD, gycerol injections and finally radiation (sometimes called Gamma Knife or Sterotactic Radio Surgery).  The only medication that worked was Tegretol and it nearly killed me because of liver issues.

    I have had two Gamma Knife treatments and am currently pain free.  I do not know how long this remission will last but I am a really happy camper for now.

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  • Posted

    Thank you everyone for your replies. I really wish there was a quick fix but reading your comments makes me realise it could be an awful lot worse. Let's hope I don't find out!! Thanks.
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