more doctors, more confused.

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I have had TN diagnosed by GP's and atypical facial pain diagnosed by a Pain specialist.  I use Tegretal and Ativan, I do just okay , found a level i can tolerate for pain but the tegretal makes me off ( sort of drunkish).  Now I have finally been to a Neurologist and he has indicated that he feels I have just atypical facial pain because my pain is in more than one place on the left side of my face.  He says TN is only 1 spot.  I have pain in the left ear, under the left eye, down the sinus cavity and in the teeth and jaw of the left side. it can be severe pain that drops me to my knees if I am not on tegretol.  Does anyone else have TN that appears as pain in more than place in the face.  

The MRI is not showing anything. The neurologist is referring me to a neuro surgeon now. I am confused and scare now.

I hve not been able to work the whole time I have been in this pain, about 18 months now.  I dont know how anyone works during this.

My TN comes and goes with huge pain, atypical facial pain stays all the time,never lets up but is not the great pain of TN, slightly lesser. Tegretol works on both but as I indicated with side effects.

Anyones input please.


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  • Posted

    I have pain in the same area's. I was diagnosed with TN and have had it for 20 yrs and was misdiagnosed sad I have kept it under control with magnesium 400-500mg, you can get it at any vitamin shop. Another solution is dextrose (sugar) injections to every part of the facial pain. I know it sounds weird, but it calmed my pain level down from a 10 to a 4, but doctors won'the tell you these things. I'm going back for another injection soon. Naturopathy in your area.
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  • Posted

    Hi Cindy,

    Welcome to the forum.

    Im sorry to hear your in pain and I sympathise with you.

    Like Cindy I've been a sufferer of TN for over twenty years too, for me it was on and off with 9 months remission in between. I was prescribed Tegretol which had to be increased gradually until I reached 1200mg a day and had to have Amitriptyline at night to top it up. The Tegretol does take a while to settle down, for me about a month, and once it does you should be able to take it without the nausea as normal. I had terrible nausea at first and felt really drowsy and that's why I often retired to be at around 9pm. But I know everyone is different and it effects people in different areas. But after a short while I was ok and just had early nights.

    I have the pain in my right lower jaw and what feels like a row of toothache. Occasionally I had stinging pain on the right side of my face and near my eye, but this was rare. My TN first started off with stinging of my tongue on the right side. So anyone who suffers with TN can have it in different areas. I've read some of the patients cases on here and that's where I read one of them took Cod liver oil capsules daily and no longer had TN. There are lots of advice on here and different remedies people have tried. I'm not sure if it would work for everyone, but you could check with your GP if you're uncertain.

    What dosage of Tegretol are you on?

    Let us know how you get on. Good luck.

    Kind regards




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  • Posted

    Hi Cindy. I have just joined so hope I am messaging through the correct format.

    I have been suffering with facial pain since October 2011.  It seemed like toothache but moved from one tooth to another.  I went through all the general protocol of dentist, orthodontist, and GP.  My pain was intermittent and excruciating so I totally feel for what you describe.  My pain is totally at the left side, but like you can be in my jaw, cheekbone and eye area.  The pain went into remission and returned in 2014 at which time my GP diagnosed TN.  I was put on Tegretol which like you I struggled with so after a short time was then put on Gabapentin (Nurontin).  I stayed on this until December and then decided to come off as my pain had stopped.  However it resurrected its ugly head with a vengeance in May this year.  I have gone back to Tegretol and after a trip to A and E when the pain was at its worst, a constultant there put me on a higher dose (600mg) combined with Pregablin/Lycol (150mg).  This was amazing at coping with the pain, but OMG side affects are terrible. 

    I have managed to reduce the Tegretol down to 200mg which helps but the pain is not totally eliminated with doing this.  However I feel I can cope better as the side affects leave me so tired and drunk. I also feel dizzy and my vision is affected.  I cannot look up or down or left or right quickly as my vision goes blurred.  I also feel lightheaded and like I am going to faint.  Some days I feel quite low and emotional, which for my "eccentric" personality, is not a nice feeling.  I am not sure if these side affects are part of TN or the medication.

    Apparently my MRIs have revealed a vascular loop on my left side (where I have problems), but other than that all other tests seem fine.  I also experience pain in my left shoulder and arm and have also had it in my left leg.  This started in October 2014 with a sort of pins and needles sensation.  I don't know if this is connected to TN?  I know it isn't the medication as I have experienced it even when in remission and stopped medication between December 2014 and June 2015.

    My last consultation with my neurologist was in July 2015 at which time she has said my symptoms are baffling her and not classical TN as my pain is 24/7 and not short sharp burst of a few seconds or minutes.  She wants to refer me to yet another consultant for a third opinion.  This first specialised in epilepsy so she was quick to refer me to the second one who specialises in MS.  Do all consultants want to pass the book?

    I too would welcome feedback from anyone.  Thank you.

    Like you, I have since last year since 2 neurologists and have had many MRIs and other tes

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