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joanna66862
joanna66862

Hi - I was diagnosed 4 months ago with Trigeminal Neuralgia,after suffering what I thought was toothache for around 3 months, that was until I admitted that my handbag full of different painkillers was not normal and started worrying that I had something far worse.  I first went to the dentist who said I needed a small filling which would not be causing the pain I was in but filled the tooth anyway after which I was in agony, I then a week later went back to the dentist (a different one) who checked my filling which was fine, no infection etc and then sprayed some cold air up into my gum, I nearly died!  Then straight to doctor who put me on Carbamepazine and strong painkillers which worked after a couple of days, but 3 weeks later horrendous side effects including liver changes.  I have been on gabapentin since and take 1500mg a day plus whatever painkillers I need.  I have only had a couple of days where I completely forgot I had a problem, it always seems to be there, in different severities (I have constant pain and the sharp electric shocks).  My doctor last week told me very little is known about TN and I now have an appointment with a maxillofacial surgeon in January at the Queen Elizabeth Hospital B'ham.  My question is why this particular surgeon and not a neurosurgeon or is this general practice.  If anyone has any answers it would be appreciated.

 

0 likes, 13 replies

13 Replies

  • celeste47775
    celeste47775 joanna66862

    Posted

    My GP recommended an ENT. I wish there was a Trigeminal Neuralgia specialist out there I have so many questions. I can usually feel the bad week-long episodes coming on for days. I wonder if I could start the Gabapebtin when I feel it coming on and quit it when the episode is gone. Lots of other questions too. Keep us posted on your maxillofacial appt. And good luck! ♡
    • joanna66862
      joanna66862 celeste47775

      Posted

      Thank you for replying.  My doctor told me not to start to come down off the medication until I had been completely pain free for 2 weeks and then to gradually come off, the downside I suppose is when it starts up again you are starting from scratch with the meds.  Will post how it goes!
  • Valkyrie
    Valkyrie joanna66862

    Posted

    Hi Joanna,

    Maybe they think you have TMJ rather than TN. Other than that, I have no idea. It might be a good idea to google TMJ before you go so that you can ask appropriate questions if they start talking about that as being you problem. Good to have info always and a Maxillofacial surgeon seems a strange choice.

    • joanna66862
      joanna66862 Valkyrie

      Posted

      Thanks for replying.  I have just googled TMJ, it was interesting in the sense that I did have a problem with my jaw at the beginning where I was unable to open my mouth properly for a couple of hours which I did at some point tell the doctor but other than that I don't have any other symptoms.  At the doctors I go too I have dealt with three doctors who all agree that it is TN, originally they said they would send me to a neurosurgeon at the Queen Elizabeth but would check to see who was the best person.  Would it be dependent on the type of treatment offered?  
  • richardvilla
    richardvilla joanna66862

    Posted

    Sorry I cannot answer your question directly but am interested in your post because you are in Birmingham . You said you thought you had toothache for 3 months . I have had aches more than localised pain in my upper teeth spreading from one side to the other. In bed at night if I sleep on my left side the left upper gums hurt. If I sleep on my right my the dull ache runs from my upper left to the front teeth. I've suffered with sinisitus for the last 5 or 6 months. My ears feel like they are inflamed and if I bend down it feels like my upper gums and ears are full of pressure. I haven't been diagnosed with tn but doc has put me on amitripyline to try calm the aches down. Did you get any of these symptoms?
    • joanna66862
      joanna66862 richardvilla

      Posted

      Thanks for repying.  It is does feel like constant nagging toothache when in the jaw and also very sore gums but can change from top to bottom jaw in the space of an hour and although I have had the startings of the same pain in the right side it's nothing like the pain in the left.  I have read that sinus pain/infection can feel similar to TN pain.  Mine can start by something stupid like a blusher brush on my cheek or walking outside and a cold breeze touches my face, I have to brush my teeth in warm water as cold/hot can start it off.  Recently my eye has been hurting and my temple.  Not sure if you can relate to this but I would get the doctor to definately check to see if you have sinus problems as well.
  • eddie13
    eddie13 joanna66862

    Posted

    Hi Joanna66862,

    Omg I had your exact story in 2007. I got root canals and an extraction I did not need. The Endodontist directed me to the right place, the Neurologist.

    Now the TN symptoms 99% covered by Carbamazepine. At the begining, a low dose was enough. Increase the dose has been necessary over time. Now 4 x 200 mg per day. Evenly spaced is very important. So a pill every 6 hours as exactly as possible. I use alarms on my phone.

    Shocking at the time, the root cause was determined to be MS. I had no motor skills problems at that time, but now I do. So I know I've got it.

    I'm 55 in a big family that has no history of MS or TN. Thanks to the pills, it's no big deal now. Once a year or so I get a surprise shocker. I just take an extra pill. Good as new. You will find your answer, but get to a neurologist asap.

    eddie13

    • joanna66862
      joanna66862 eddie13

      Posted

      Hi - It's scary when someone has he same kind of story as you.  I had a nerve test about 12yrs ago for MS but was told it was a trapped nerve, which I have had many times since (not been back to the doctor) sometimes more painful than others to the extent that I cannot move my arm for hours up to 1 or 2 days properly, sometimes physically ill with the pain, but I assume that I do get a few trapped nerves!  I imagine that if I see the specialist next month he will refer me to the neurologist if I've been sent in error, I would hope anyway!  My grandad suffered with severe nerve pain in his face according to my mum, he would apparantly take himself off to bed for days on end it was so bad.  Can TN be genetic?
    • Valkyrie
      Valkyrie joanna66862

      Posted

      I got told it was not a genetic condition but that the nerve and blood vessel arrangements in the brain can be genetically pre disposed which means, in effect, that anyone in the family may be a candidate to get it if they inherit that arrangement of nerves and blood vessels. A very fine line it seems to me.

       

    • wanganui
      wanganui eddie13

      Posted

      eddie do you have no side effects from carbamazepine ....weight gain,nausea...? I have tried so many meds for my ATN but have to stop them because of serious side effects so when I read of someone like you being so successful on a certain drug I am pleased for them yet have a certain envy........have a good day!
  • richardvilla
    richardvilla joanna66862

    Posted

    Hi there

    No brushing my teeth or feeling my cheek doesn't really set if pain but if I lean on my ear I feel the ache trunking through my jaw to gums. I do have sinus problems so I'm hoping it's that alone. Still very uncomfortable though.

  • Proxy
    Proxy joanna66862

    Posted

    I have been researching this kind of thing for a while. My girlfriend is very sick indeed. Her Atypical Trigeminal Neuralgia was never a correct diagnosis. It is a symptom. Remember, that in explaining a thing no more assumptions should be made than are necessary. Her condition is severe and most recently her heart condition and cardiovascular system mean that she has the real risk of heart attack or stroke. And all these things can lead from a tooth/gum infection that is very hard to find. For her it all began with wisdom teeth extraction over 7 years ago. And despite all the consultations, unecessary extractions, medications, painkillers, diagnoses, it was where it started. At the dentist. 7 years ago. Oral spirochetes. Do not reach for the ciprofloxacin. They were never 'super-resistant', it just makes them aggressive.

     

  • joanna66862
    joanna66862

    Posted

    Well, I had my appointment with the Maxillofacial Surgeon last week, he was really nice which was a relief as I was terrified he would tell me to get over it!   He has referred me for a brain scan and an appointment with him for

    a week later, so i'm hoping this may all be sorted soon!  

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