Trigeminal Neuralgia - do I need to see a neurologist??

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I have been diagnosed with TN from my GP and originally had a flare up (lasting a week) and then nothing for 18 months, but have recently finished my second flare up 6weeks ago and have been left with a more constant numbness / ache / tenderness on the side where my TN is - can anyone tell me if they have ever had a similar thing?? my GP says there is no point sending me to a neurologist as there is no tests that prove TN and the fact that Carbamazipine worked proves that it is TN? he also says a neurologist cant do anything for me other than give me the same meds the GP can. i am 33 and concerned - the lightning bolt pain when having a flare up is debilitating. Any help or advise very appreciated!! thanks

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10 Replies

  • Edited

    a neurologist may give you pain meds to help deal with it better. also a neurologist can perform a procedure to relieve the pain all together.. i have TN type 2. and it has took my life away.. nothing is truly helping

    • Edited

      thank you for this - I appreciate you taking the time to get back to me. I will contact my doctor and ask him to refer me to a Neurologist

  • Edited

    Hi Laura96942,

    In my opinion I would recommend seeing a neurologist.

    I've been many times to see one since this horrific pain started.

    He has put me on 400mg per day of Tegretol, but I am seeing him again this week to ask about surgical options.

    I know only too well about the ''lightning bolt'' pain and just talking with a neurologist helps with some kind of peace of mind that there are options.

    Please let us know how you get on and you are not alone. xx

    • Posted

      thank you for this - its reassuring that someone can relate to how this feels, did you by any chance get any testing done to check there was no underlying condition / get this diagnosed (i have seen that this can be MS related) ? i have read that some people get MRI's to help diagnose but my GP thinks there is no point ?

    • Posted

      sorry - do you get / notice any warning signs before a flare up? i noticed recently that about a week to 2 weeks after a flare up my "bad" side of my face felt numb and tender, and around 5 days after that i had another flare up - im trying to see if there is a connection or just coincidence. thanks x

    • Posted

      You're welcome.

      So yes, neuralgia can be a secondary condition to a primary condition such as MS, so my neurologist suggested an MRI scan just to rule this out.

      I had the MRI and my results showed no other condition, so the neurologist told me that in my case neuralgia is the primary condition and the cause is unknown.

      I have been grinding my teeth though for some years now, as my dentist kept on telling me and kept on urging me to get a mouth guard. I just thought it was my dentist trying to upsell to me, but I wish I had listened to them back then, as teeth grinding can be a cause of neuralgia apparently. I gave in and paid for a mouth guard and collected it from my dentist today and I will be wearing it every night while sleeping and whenever I am at home watching TV.

    • Posted

      No need to apologise. It's good to talk about this with someone who understands! I don't get warning signs as such. It just seems to flare up randomly, but to be honest the bad side (my right side) is always aching which is better than the lightning bolt, but it feels as if it is ready to flare up at any moment. I can't wash my hair properly and I dare not dry my face. It feels as if there is an electric current there constantly just waiting to shock me if I make a wrong move.

    • Posted

      Hi - I just wanted to see how you are getting on with your mouth guard?? has this been helpful for you? 😃

  • Posted

    Hi Laura sorry that you are going through this. When this first started for me a Neurologist was a waste of time and diagnosed in 2min tops with no respect to me - not that all are like that. Your GP may not be equipped to deal with this? What really helped is I found a Orofacial pain specialist which happens to be a Dentist at a major hospital that has really me. My treatment for now is gabapentin, Cymbalta and botox every 3 months.

  • Posted

    Hi Laura,

    I can fully understand the pain and frustration that you are going through. I am halfway through my 2 weeks off work(holiday) and on my first day TN started, much worse than when I first had it last year. I uped my dose of Tegratol to 2 a day and it made no difference. This time round my right side where all the pain always happens, my face started to swell. It got to the size of a tennis ball so I went to A&E and I got more meds. Still a bit swollen now after 5 days and difficult to eat.

    Last year I was seen by a neuroligist and finally given an MRI which showed up several white spots but not MS. I'm now waiting for another MRI for my spine to double check and getting a yearly MRI to keep an eye on things. This is all down in Kent.

    Hope this helps, unfortunately you need to push and pester these people.

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