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Is it trigeminal neuralgia?

Posted , 9 users are following.

Welsh_girl
Welsh_girl

Hi about 2 months ago I had what I thought was toothache dentist assured me it wasn't my teeth so went to docs and was given Tegretol for trigeminal neuralgia.Eventually pain eased after taking 200mg of Tegretol a day! So nothing then for weeks and night before last had the pain again in my face and all around my teeth took 2 ibuprofen and 2 paracetamol didn't to touch it took 200mg of Tegretol and held a hot water bottle to my face! Eventually I held soluble paracetamol in my mouth and held it in area hurray pain went!!

I am going back to dentist tomorrow just to check it's not teeth but do you think it sounds like trigeminal neuralgia to you?

0 likes, 14 replies

14 Replies

  • akil41128
    akil41128 Welsh_girl

    Posted

    Yes

    Make sure you take ur mess regularly and if pain comes back, go back to ur neurologist and see if you need to do to add another medication

  • army183
    army183 Welsh_girl

    Posted

    Sounds like TN but it could be many other things. Your doc/consultant should advise you. You need to keep levels of Tegretol up in the bloodstream for it to have a useful effect ( if indeed you do have TN, which needs to be confirmed)

    There are loads of people on here that take this drug, some of them take very high doses during outbreaks and lower maintenance doses when in "remission" You need the advice and dose levels from your practitioner.

    Good luck

    Big D

    • Welsh_girl
      Welsh_girl army183

      Posted

      Thanks for your reply army I really hope it isn't TN as it is such a debilitating illness! with no cure? Yes I will go back to docs after I just double check with dentist that it isn't my teeth?

      Trouble with these Tegretol tablets they really knock me out maybe in time you get used to them?

    • army183
      army183 Welsh_girl

      Posted

      Yes, like many others I went through the dentist route! Had all my teeth xrayed on the offending side but found nothing. Some poor people had root canal and extraction treatments to no avail. This is because the dentists were not educated enough in this area I guess. My next step was referral to ENT specialist who did a quick scan of my head (while sitting) and happily said there was "nothing untoward" and that I probably had TN. Next referral was to neurosurgeon. This will probably be the route for you, as it has been for many of us.

      Oh yes, it might not be TN at all but you've got to sort it out. There are many other drugs than Tegretol that are very effective and many people in this site report on their use.

      There never is one drug and one dose of it that works for everyone. We're all different.

      Good luck - keep us informed of your progress.

      Keep safe

      Big D

  • Valkyrie
    Valkyrie Welsh_girl

    Posted

    Hello Welsh girl,

    This could indeed be Tn and it's good that the doctor put you on Tegretol to start the ball rolling but there should always be a follow-up appointment with a neurologist as soon as this can be arranged. The Tegretol, is only a starting point from which the Neurologist will move on by either increasing your Tegretol, changing you from one kind of Tegretol to another (many Neurologists use slow-release Tegretol) or moving you to another drug entirely. A GP simply does not have sufficient knowledge of this condition as it is very complex. A Neurologist can also test you for other conditions so that you get the correct diagnosis. Keep taking the Tegretol, and as akil41128 has said, take them regularly to keep the level up in your bloodstream. They are not a pain killer so they do not work instantaneously in that way. If a Neurologist appointment has not been made by your GP you must insist on having one, and if you are still getting pain, ask your GP if you can increase the Tegretol dose per day. I got used to the sleepy feeling of Tegretol after a while and even though I am now taking 900mg per day Tegretol and 350 Lyrica as well, I am able to function ok.

    From your ID I assume you are in the UK although this forum has many members from other Countries as well.

  • Stupid1
    Stupid1 Welsh_girl

    Posted

    Welsh girl,

    Dont really need a referral from primary care doctor , just call ur insurance provider and have them give u a neurologist.

    That is what a this insurance in U.S, was about seeing any doctor you want to see without having a referral from a doctor.

    Make ur own appoint u don't need a referral.

    God bless

    us and keep us and give us peace

    • Valkyrie
      Valkyrie Stupid1

      Posted

      Hey, that's interesting! Doesn't work like that in Australia. Good to know

  • sam_90350
    sam_90350 Welsh_girl

    Posted

    You got exactly what I have..it's a nightmare.the only time it goes away is when I sleep.iv had it now everyday constantly for 4 years..it feels like I want all my teeth pulled out.iv been told it's tmj by one doctor the maxiofacial department and the other doctor the neurological one told me it's typical facial pain

    • Valkyrie
      Valkyrie sam_90350

      Posted

      Hi Sam, I wonder if the Neurological doctor meant atypical pain.  there are a number of different types of tn, ,for instance, one is tn1 (what I have) and another one is atypical (which I beleive is harder to treat). I thought I had tmj for a while when I had terrible aching face and jaws and i could hardly speak at all from the clenching of my jaws but that went away after a time and now I seem to have the Tn1.
  • clint71
    clint71 Welsh_girl

    Posted

    Keep in mind that 200mg is an extremely small dose. If it does turn out to be TN, talk to your doctor about increasing the dosage as necessary. Before MVD surgery, I'd take 800mg every day even if I had no pain. When there was pain, I'd take anywhere from 1200-1600mg daily.

  • army183
    army183 Welsh_girl

    Posted

    Clint71 is right, you're on a very low dose. I'm on 600mg maintenance and at breakthroughs I'm taking about 1400mg per day, more if it's really really bad luckily I cope with the side effects quite well.

    Cheers

    Big D

    • Welsh_girl
      Welsh_girl army183

      Posted

      It is a small dose but that knocks me for six! Been to dentist today is going to remove wisdom tooth on that side as it needs to come out plus a few small fillings in the area the work needs to be done anyway! But says if you still have it after that it must be TN?
    • Welsh_girl
      Welsh_girl

      Posted

      Do you recommend I still take medication? It frightens me a bit as I do feel a bit weird on it! However anything is better than that pain?
    • Valkyrie
      Valkyrie Welsh_girl

      Posted

      It does make people feel a bit weird for a time but I would be afraid to stop just before a visit to the dentist. If it is Tn, maybe all that stress and things happening in your mouth would bring on an attack.
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