Just diagnosed with trigeminal neuralgia

Posted , 16 users are following.

Hi, new to this! I was diagnosed with this yesterday after suffering around 2 weeks with facial pain on the right hand side, behind my cheekbone and down my jaw, a constant 'dull' throbbing with occasional 'flashes' of more acute pain. It started just after dental work but the dentist looked at me twice again and confirmed it is not tooth related, even though sometimes it feels like the pain is hitting there! I have been prescribed Carbamazepine, one pill per night. Any words or advice or such are welcomed!

1 like, 38 replies

38 Replies

Prev
  • Posted

    Hi Jason,

    I am currently 50 Year of Age.

    I started feeling the TN symptoms about 2 1/2 months ago. My pain starts at the back of my left eye, traveling up-wards to the top of my skull.

    When the pain reaches the top of my head, it increases the pain level, then it  travels through all my head, and if I try to touch any part of my head while that is occuring, my pain magnifies like crazy, sort of “like if was turning-up the volume on a powerful audio stereo all at once.”  

    I started with 200MG every 12 hrs of (Carbamazepine) "which is the generic version of Tegretol." I am currently taking 600mg every12 hours. It works at times and some  times it doesn’t , specially if I forget to take your medicine on time.

    Overall, as I started to take the medicine, I did not get the pain as often, or as strong. Although "it does come back, bad on some occasions".

    I discovered that if I go out for a walk, or perform some exercise activities, seems to go away for a while.

    Hope your Tn symthoms are under control with your meds. Or may be time to ask for a higher dousage?

    Goog luck to you Sir and have a nice day.

    • Posted

      Thanks Tony,

      Your message is greatly appreciated! My pain is similar it seems in intensity but is in the right hand side of my face, often starting as a sort of 'ice cream' headache in my cheek and working down the way, but sometimes up into my cheekbone, which is the worst! I take 2 100mg Tegretol pills at a time, normally 3 times per day, but sometimes 4.

      The frustrating thing I find is once the first lingering throbs appear, nothing can be done to prevent it happening! More a case of letting it ride out!

      I am due to see a neurologist soon, though the pain in the last 4 weeks has greatly subsided, and on most days is not present.

      Hopefully we can keep in touch about our experiences!

  • Posted

    Hi Jason, I found out I had TN 6 months ago, I'm 30 and it has been quite horrific. I think there are several types of TN mine extrememly aggressive when I am cold (especially under aircon) so I use the labavander soft toys or scarves that you microwave or hot water bottles to rest my face on. I carry a scarf everywhere and as everyone says take your medication reguaraly I have set an alarm for every 5hours, I couldnt stand the side effects of tegretol it was impossible to go to work, so I take Oxcarbazepine 150mg x2 a day with Neaurotin 600mg x4 a day and to keep me upbeat or to help go to slep Amtriptyline 2-3 25mg.

    I have found talking to people like myself extremly helpful, and i hope this helps you find some comfort. Tanya x

  • Posted

    I was diagnosed with TN Feb 2015. I went to a dentist and she pulled out my tooth but the pain was getting worst. Finally I met a dental specialist who  proposed that I should see a Neuro Specialist. I lost 20kg in weeks and lived starving for months. I have milk supplements at home to help me out. The specialist started giving me expensive meds like Lyrica & Cymbalta and many others but after 4 months, I asked for Tegretol as my cousin is using Tegretol. He changed my meds to Tegretol 200mg bd & lyrica 100mg bd. Since then I can't stop using these medication. Everytime I tried reducing the dosage I get tiny electric shocks to my right lower jaw. Lyrica is very expensive it cost me around near to USD125 a month but I get free Tegretol from the General Hospital every 2 months. I wonder if I can stop these medication but nope. I get depressed at times and felt very sleepy at work but just continued. I gained so much weight and trying to control the food. But I totally stopped eating citrus food, cold water, hot salsa kinda food, etc and have a good night sleep. its better now but still with medication. I took supplements to help the liver to detox too. well just sharing. hope some info helps. 

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.