1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

bouts of TN every 5/6 months - have I been misdiagnosed??

Posted , 3 users are following.

winchmore
winchmore

Hi all

I'm a newbie here and would appreciate advice from all of your experiences. A year ago I had what I thought was a bad attack of toothache but it was strange in that it affected teeth on top and bottom of jaw. They became loose, the gums swelled and the pain then spread towards my ear and down my jaw where it stopped exactly midway at my middle teeth. The pain itself was burning, throbbing, excruciating. ! saw a dentist who found nothing wrong and by the time I got to doctors it had all but gone (6 days later). Nothing more until 5 months later when the same thing happened but with worse pain and for slightly longer - went straight to doctor who diagnosed TN and gave me an anti-depressant. Again, pain went a week later so don't really know if tablets worked as I then stopped taking them. The last bout I had, a month ago, started under a particular tooth and spread in the same fashion as before but I was keeping notes this time (before the pain crippled me!) and it took 3 days for the pain to spread to ear and along the jaw. This time was different though in that my gums swelled up so much they covered my teeth (dislodging a crown in the process) and the pain spread partly down my neck as well. I was in such indescribable pain that I ended up at Harlow A&E on a morphine drop for 24hrs. Doctor said it was a tooth infection and gave me antibiotics and oralmorph for the pain. When the swelling subsided I was referred to an oral surgeon to have the remains of the crown removed as it feels as though that is where the trouble starts - waiting to hear about extraction. My question is (apologies for the long-winded description above), is it TN if it only happens every 5/6 months and I don't seem to get the electric shocks you guys talk about? At one point the pain was so bad that I was clawing my arms to take my mind off it - I never thought I would be the self-harming type so this was scary. I am waiting for a referral to a specialist by my dentist (my doctor seemed quite blase about it and didn't think 3 times in a year warranted an investigation) so may get a proper diagnosis then. I don't know how you all cope with the pain ALL THE TIME!! Any advice would be appreciated especially by those who have periods of remission. Thanks in advance.  

0 likes, 14 replies

14 Replies

  • joanne49858
    joanne49858 winchmore

    Posted

    Hi Winchmore, my TN started as a dull toothache type pain which seemed to come and go for a few days at a time. The problem was that when I visited the dentist, I couldn't actually tell him which tooth was giving me the pain, just that it was on the upper jaw on the left side. He took an X-ray which showed a tiny hole on one of the molars which he subsequently filled, however the pains still came and went. This carried on for around six months until one day, brushing my teeth, an electric shock type pain shot through my face from the left ear to my nose. That's when I realised the pains were not related to my teeth at all. I consider myself lucky really, as many sufferers go through the agony of having root canal treatment, teeth extracted etc, before they are correctly diagnosed with TN. Unfortunately it's not always quickly diagnosed as TN can effect different people in different ways, the same with meds. What works for one, may not work for another sufferer.
    • winchmore
      winchmore joanne49858

      Posted

      Hi Joanne49858, this tooth thing is odd isn't it? When I'm having an attack my teeth feel as though they are very loose as well as being very sore. I hope you have found medication that helps and makes it bearable for you.
    • joanne49858
      joanne49858 winchmore

      Posted

      When you see a diagram of the Trigeminal nerve you can see why the teeth are affected, It is where some of the many nerve endings are, the nose also. My brother also suffered with TN, however it affected the part the nerve which branches over the forehead and eye areas. I have pains for a few months, then remission for a couple of months, so I do have longish pain free periods. You should ask to be referred to a neurologist who can arrange an MRI to see if there's any nerve compression causing the pain.
  • Guest
    Guest winchmore

    Posted

    Hi Winchmore, I understand your confusion as most of the sufferers I know and myself have experienced more frequent bouts of pain and also that feeling of an electric shock or a bolt of lightning.

    Nevertheless, as you will find out from other contributors on this site, the pain experience can be different. For example one person complained of pain in the eye whereas I never experienced that. Another had the pain in the right side of their face whereas most get it on the left side. But all were diagnosed with TN.

    So it seems that it can be different for different people.

    I would recommend seeing a neurologist for a more definite diagnosis just to be sure. I hope you have a good outcome anyway.

    • winchmore
      winchmore Guest

      Posted

      Hi tk1946, thanks for the response. I suppose all the above is what makes it so hard to diagnose especially when only .05% are sufferers (or so they say). I certainly think that it is too much to expect a GP to take it on and I would feel more reassured to know exactly what it is I have got even if the prognosis may be poor. Finding this forum is great because I hadn't realised that some people have it all the time which must pretty well be unbearable. So, so sorry for you all.
  • Valkyrie
    Valkyrie winchmore

    Posted

    i noticed you said they put you on an anti depressant which is interesting. i have not heard that before actually.You did not mention whether you were also given any other drugs such as Tegretol. As the others have stated, TN is so varied and ever changing that its no wonder its hard to know what you have and where the pain is coming from . I also think you need a neurologist and esp an MRI as there may be a prospect of releif for you in that.
    • winchmore
      winchmore Valkyrie

      Posted

      The doc said that one of the reported side effects of the anti depressant is that it helps with nerve pain and that it has been widely subscribed for some years. Problem with anti deps is that they take some time to kick in by which time my attack had passed. He went to great pains (sorry about the pun) to explain that he totally accepted what I was saying and that he was not suggesting I was depressed - nearly suicidal at one point but not depressed!! No other drugs prescribed as I believe I probably knew more about TN by then than he did.
    • joanne49858
      joanne49858 winchmore

      Posted

      Sorry that should have read absorption into the body, not bones.
  • joanne49858
    joanne49858 winchmore

    Posted

    I expect that the anti-depressant you refer to is Carbamazepine which I understand is also prescribed to sufferers of Bi-polar as it is a mood stabiliser, however I found that the drug actually caused me to be depressed! Having said that, my GP did a few blood tests after my bursting into tears during an appointment, which showed my thyroid to be under active which can also cause depression. Apparently carbemazepine can excacebate the problems associated with under-active thyroid
  • joanne49858
    joanne49858 winchmore

    Posted

    So that meant more meds (as if I wasn't taking enough already!). Since then my depression has lessened but sometimes I still feel very low. I also found out that it can effect the absorption of vitamin D into the bones, and a test found that I was chronically deficient so am now taking vitamin D supplements too.
    • winchmore
      winchmore joanne49858

      Posted

      fortunate enough not to suffer from depression but am on levothyroxine and a blood pressure med - came off statins as they made me feel quite ill but that was a couple of years ago. Don't really want to take more tables for TN but if it helps - bring it on!!
    • joanne49858
      joanne49858 winchmore

      Posted

      Did you have thyroid problem before taking carbemazepine? I don't know if I was as I had never been tested before. Doc thought that there may have been another reason for my feeling so depressed, so did blood test.
    • winchmore
      winchmore joanne49858

      Posted

      Yes, had thyroid problems for about 10 years after I went through the menopause and insisted all the stuff going on wasn't to do with the change Mr Doctor!!
  • joanne49858
    joanne49858 winchmore

    Posted

    That could be the case with me then. I had a full hysterectomy around 15 years ago, so have been going tghrough the change since, but as I had never been tested, I'm not likely to ever know if I had the problem before starting TN meds. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.