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My second bout of TN

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colin69485
colin69485

I've just joined this group, after the onset of my second bout of TN.  The disorder was first diagnosed 18 months ago; I was prescribed Tegretol and took just 1 tablet x 100mg. for about 3 months, after which the pain subsided and I've enjoyed a period of remission of over a year. One week ago, it returned with vengeance! The pain is much worse and now affects the lower region of my left eye, as well as the left jaw. I'm taking 3x100mg per day and seeing my GP this coming week for a drug review.

Having read the message posted by Michelle, I realise that my case is fairly 'small beer' but as it looks as if I'm setting out on a journey that could easily affect my future quality of life, any advice at this early stage would be greatly appreciated. Thank you. Colin

 

0 likes, 12 replies

12 Replies

  • Nascar1
    Nascar1 colin69485

    Posted

    Neural Prolotherapy (Dextrose injection) look into it! I've had trigeminal neuralgia for 18yrs. I'm a 36yrs old male who experienced the bottom of barrel of this painful ordeal. Give it a shot! I'm doing so much better now. Did 2 injections maybe 1 or 2 more and I should be good since I've had tn for so long. 
    • colin69485
      colin69485 Nascar1

      Posted

      Hi Nascar

      Thank you so much for responding. I've checked out Prolotherapy and it looks promising. Will read more and explore further.

      Many thanks. Colin

    • mufti04211
      mufti04211 Nascar1

      Posted

      i have TN for a year and half. today is my worst day ever as tegretol is no more effective, i haven' eaten drunk or spoken for three days. you gave me some hope. i experienced pain of the eyes, kidneys and ears, but TN is the worst. 
    • wanganui
      wanganui Nascar1

      Posted

      Hi Nascar1.....this is a shot in the dark as your post was over a year ago!

      I have researched into Prolotheraphy and wondered about having it done.Did you have ATN or TN? I also read a lot of negative postings about it.What made you decide to go ahead with it! I'm so happy for you that you are pain free .

  • alicot
    alicot colin69485

    Posted

    This happened to a lot of us.  It is not unusual.  The answer....get one of the TN surgeries.  There are several to choose from.

    I am suspected of having MS so I had the radiofrequency surgery.  In and out in half a day, have done by someone experienced.  My doc has done lots so was very smooth.  No scars, very little pain. Was able to get back to life immediately. Took a few days off for healing but only had a little pain. A Tylenol took care of it.  You DO get a numb spot were the pain used to be AND it isn't permanent but can last several years. Then you do it again.

    But there are other surgeries...look on line...a little research goes a long way!

    • colin69485
      colin69485 alicot

      Posted

      Hi Alicot

      Thanks for you kind response - what exactly is a TN Surgery? 

      Best wishes Colin

    • alicot
      alicot colin69485

      Posted

      A TN surgery is usualy an outpatient procedure where they inject or put a needle into your cheek and burn the trigeminal nerve , or an acrual surgery in the back of your neck where they put a balloon between the nerve and where it is rubbing or put something else between so the nerve isn't touched by anything or they use radiation (gamma knife) to damage the nerve so it won't "go off".  These kinds of things can be done.  None are horribly invasive or long.  Now, there are those where a surgery of choice won't work.  I shudder that that is even possible.  The majority, I believe, have success and are off drugs.  Some do surgeries and stay on drugs but the drugs work better. In my story, I looked and hoped for a surgery that would get rid of the problem either for a long time (nerves can grow back and often do) or forever. I found this with a radiofrequency thermal surgery where they stuck a needle intomy cheek and burned the nerve with heat. It took less than an hour and I went home the same day.  I only needed tylenol for one night and then it didn't hurt. I took the week off from work but many people go right back to work.  The wound created heals up within the year.  

      The first time I had this done, I got amnesia dolorosa on my face but it went away.  This is a condition where it hurts to touch your face. The first such surgery only lasted 7 months so I did again. The doc upped the heat. I am in my 10th month with no pain, All healed up with a numb spot on my face where the pain used to be.  I got off all drugs ASAP successfully and without incident.  So right now, I am happy and all is well. I have had a chance to go on a major vacation and with help am recovered from the trauma of that TN pain.  I was completely freaked by the TN pain, screaming on the floor at times, afraid to eat or even talk.  But not any more!  I vote for getting a surgery and ending the pain and the drugs.  You can look this all up on line.  All the info is there.  My doc is Kim Burchiel at OHSU (Oregon Hospital and Science University, in Portland, Oregon.  I had to have a referral from my GP to get in. But once in, things went quickly and I am guaranteed a quick response should it come back.

      Does that help?

    • colin69485
      colin69485 alicot

      Posted

      Thank you very much for a very detailed and helpful response.

      I'd initially wondered whether there was actually a surgery that dealt specifically with TN - hence your phrase 'a TN surgery', but I can see that you're using the expression in a different way, namely to describe a procedure, not an establishment.

      Thank you also for passing on Kim Burchiel's details.

      Colin

  • eddie13
    eddie13 colin69485

    Posted

    Hello colin69485,

    Some of us have no good option other than Tegretol. Likely you found 300 is below the standard recomended max of 600. Some of us go beyond 600. Just part of weighing all options. Everyone's case seems to be different. I've been at this since 07.

    Eddie13

    • colin69485
      colin69485 eddie13

      Posted

      Hi eddie13

      That's really helpful - thank you. I've upped the Tegretol dose to 4 a day and I've been pain-free as a result. The trouble is, one doesn't know if it's a short period of remission or the effect of the drug! I'm beginning to get the hang of this complaint! It's got a mind of its own! Take care. Colin  

  • Glor888
    Glor888 colin69485

    Posted

    Hi Colin, glad to hear you've sorted out the level of your medication. Its always trial and error with these tablets.

    For me Tegretol was a god send, I used to take 1200mg a day and when it was a bad bout I took Amitripyline at night. My history was 9 months pain and 9 months remission. This was for over 20 years, then I had a 6yr gap, pure bliss, then it came back with a vegence last year. Im at the 6 month stage now and taking Pregablin as unfortunately Tegretol did not work for me this time around.

    As other posters have suggested everyone is different and has different stories to tell. Your first bout was 3 months on and 18months remission, you may experience the same yet it may be different. Either way I'm glad you are pain free at the moment and thats what counts.

    Good luck and do keep us updated of your progress.

    Regards

    Gloriana

    • colin69485
      colin69485 Glor888

      Posted

      What a positive and constructive post. Thank you. Colin 
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