My experience with TN

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If you are reading this then welcome to Hell, well at least until you get properly diagnosed and are given a script for tegratol...

  My story: 

Three years ago it was just a normal morning, brush your teeth, have a shower and towel your hair dry, except that vigorous towling resulted in an “electric shock” type of pain that I (wrongly) attributed to some overdue dental work. 

  Over the next few days it worsened to the point that the pressure of the water in the shower could cause excruciating pain. I had booked a trip from Australia back to England to see my family so I decided to get my “dental” issues sorted out when I was there but the symptoms went away. 

  A year later they came back so I went to see my GP, he recommended exploring possible dental issues but was clued up enough to bring up the possibility of TN. 

  The dentist could find no issues that could be causing the pain I was describing (left side of cranium) but while I was there I started experiencing “random zaps” that had nothing to do with touching my face and were F..king EXCRUATING ! Never experienced pain like it before in my life. The dentist was brilliant and after a series of phone calls established that he was able to write me a script for tegratol. We had previously discussed my GP’s opinion so he knew TN was a possibility and told me that if tegratol worked then I could be pretty sure my GP was right.

  Tegratol isn’t a magic bullet and takes a few days to kick in fully but my GP and dentist saved my life. After about a week I was pain free apart from minor “Zaps” 

   Subsequently I went back into remission for about a year (ie drug free) but my TN is now back and I’ve had to double the dose of tegratol to keep it in check. It’s a great product but (in my case causes extreme lethargy) 

   If you are unfortunate enough to suffer from this dibilating condition then you will quickly learn that you will have periods of remission but they will shorten and the drugs that help become less effective over time unless you increase the dosage therefore also increasing the side affects (tegratol is also bad for your liver apparently)

  There are surgical treatments but no outright cure as far as I can ascertain. Me? Hand on heart I would have thrown myself off a bridge by now if not for tegratol and I just take every day as it comes. 

  

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6 Replies

  • Posted

    Hello

    Sorry to hear of your trouble, I had the exact problem you describe starting in 1983. Mine was on the right side and would cause unbearable pain when triggered. I started out with Tegritol, which completely controlled it at first. One 200 mg tablet would stop the pain for as long as 6 months. As time went on up to 1998, I was taking 10 tablets per day (2000mg) and it wasn't doing much of anything.

    I finally had the operation for micro-vascular decompression (MVD) in 1998 and got a complete cure. Fortunately, my case was textbook typical and there were no other problems. I was slightly deaf in my right ear for some six months after the operation but that resolved and went away. It's necessary to disturb some of the other cranial nerves to access the fifth cranial nerve. In my case, it was pressed on by an artery.

    See if you can find a good neurosurgeon who does regular MVD's.

    Regards.

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  • Posted

    I have had MVD twice,1st worked for only 6 months. The 2nd time worked for a year and 3 months. I am currently having minimal shocks that can be controlled little or no meds. I am praying that my pain stays this slight. 🙏🙏🙏🙏🙏Hopful for the future.

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  • Posted

    I was reading some studies that said certain patients recover from neuralgia.  I also recently talked with a doctor who told me he had shingles and had neuralgia and it took several months to get over it.'

    I have been using Amitriptyline for about one week.    I don't know if I'm getting better on account of rigid diet and exercise or if the meds are kicking in already.  I have not carried any ice pack with me which at this time last month was nearly unheard of.    

    I hope you start feeling better.

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    • Posted

      Hello, I'm not familiar with Amitriptyline. It's possible that certain patients might recover from neuralgia. There are numerous kinds of neuralgia, trigeminal being one of them. That said, if a person had a situation such as I had where a cranial artery was pressing directly on the trigeminal nerve, I don't see how someone could recover from that without surgery since it is a mechanical problem. 

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  • Posted

    yes i had the same since 2009 it would come and go i had the balloon operation on march 14th this i am now pain free but its left me with a frozen left face which did seem strange at first but now i take no notice of it better that than the  TN
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  • Posted

    Was the balloon procedure, painful? How long have you been pain free? I have had 2MVD, at the current of time I am pain free.  I pray that it continues. Thank you
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