My TN started last year

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I'm pleased I found this forum. I first started getting what my doctor thinks is TN last year. It lasted for 3 months and then it went away. It started again this year (almost exactly a year later) and seemed to come back a lot worse than the first time. I'm sitting here with what feels like little electric shocks shooting up the right side of my face and it aches really bad. The neurologist I saw last year said it probably wasn't TN and more than likely a dental problem. I doubt this because my dentist is very good and she can find nothing wrong with my teeth. I went to her because I thought I had a tooth infection but apparently its common for TN sufferers to think that is the case. I don't think dentists are trained enough to recognise TN. She didn't mention it once as being a possibility and seemed surprised at not being able to find any dental problem. My doctor has arranged for me to see a Maxillo-Facial specialist next week in case the problem is TMJ and I've been taking Tegretol (carbamapezine) twice a day. The tablets usually take away the pain but whenever I try to stop taking them the pain comes back. The worst thing for me about the tablets is the side effects. I'm 63 and work part time teaching basic IT skills for a local charity. I have to talk to people a lot while I'm there, but talking (even smiling) can be painful so its having an impact on my work and sometimes makes me feel irritable. I also feel sluggish and unable to concentrate on anything for long. Another thing I hate about the medication is that when I wake up in the morning I get these throbbing pains on the right side of my face. I then can't get back to sleep (even if its 4am in the morning!) because these pains are so intense. It's usually when I'm on the borderline between waking and sleeping that is the worst time. I'm actually afraid of going to sleep sometimes and usually put off doing so till the last minute. Does anybody else get these side effects with Tegretol?

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  • Posted

    Hi I suffered this horrible decease for 14 years. I couldn’t tolerate the pills, but I didn’t have much choice. By the way I am now 75 years old.

    In 2013 I went to the pain clinic. I was offered a procedure called “Balloon Compresion “ I was really scared but I went ahead and had it done. I was in the hospital for one day. They knocked me out so I didn’t know anything whilst I was under. 

    I had this procedure done in 2013. It is now 4 years on and amazingly no pain for those 4 years and what’s more still no pain. .

     I hope this helps you because what you describe was just like me.

     

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    • Posted

      It's good to know that there are some survivors out there! I'll have to google "Balloon Compression". I'm in the UK so I'm not sure if this procedure is available here on the NHS. It's encouraging to know that you were only in hospital for one day. I've had a bad day today, but going out in the cold wind with my face unprotected probably didn't help! I've been wearing a full face covering most days. I remove it when I go into shops though [smile] Eating isn't the enjoyable experience it used to be [sad] Sometimes when the pain starts I swear at it saying 'Come on you ******* do your worst!' Then I just grin and bear it while it does! Thanks for letting me know about your experiences. It has been very helpful to me. I hope that you will continue to be pain free.

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  • Posted

    Sorry can't keep a connection with this sight. Go back to Dr and Neurologyst. Contact TN uk they will help you. I've been a suffera of TN and SUNA for about 12 years.

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  • Posted

    I have had this condition for 6 years. This last episode has been the worst. Started up Nov 1st.....I went to Dr finally and got Gabapentin......I take 2000 mg a day 5 pills 4 times a day....I do not seem to have any side effects....I also take 300 mg of St Johns Wort with b vitamins....this week I just started treatment of Bowenwork.....today is Dec 28th and I have not had any bad pain for 24 hours now....just little warning shocks. It is not your teeth...I had a root canal in my year and still I had pain. An honest dentist finally told me it is not your teeth. I wish the best for you....just try anything ones with TN suggest except for stronger drugs.
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    • Posted

      I've heard of Gabapentin. My friend takes it for her back. I used to take St Johns Wort many years ago for another problem but I believe it may clash with the BP medication I'm taking now. I've not heard of Bowenwork but I will google it. Friends have suggested trying different alternative natural remedies. I've already tried camomile and valerian tea but they don't do much. I tried the Tegretol with co-codomol. Big mistake! I came out in a cold sweat and nearly fainted sad Anyway, I'll keep looking into it! Thanks for your advice. Much appreciated.

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  • Posted

    I can sympathize with you. I too have the pain & was put on 1/2 tablet of Carmazapine 2 times a day.

    I do not like the side effects so during the day I take 3 over the counter's with no side effects.

    As soon as I wake up in the morning I take Turmeric, El Carnatine  (I buy these products on line at puritans pride. They run a special buy 1 get 2 free!) & also Glucosamine. (I buy this at Dollar tree)

    There is no side effects! If I do get any pain (Hours later) I take a 1/2 a tablet of Carmazapine.

    I hope this gives you some relief. 

    I don't have any pain at night thanks to the Carmazapine. But I use to. I would use sensitive tooth paste & put it on the area that hurt. Pain was instantly gone!

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    • Posted

      Thanks Vicki for telling me about what you take in the mornings. I was interested in the fact that you take turmeric. I've heard before that people take this for their TN but I've never tried it. I will see if I can buy some and the El Carnatine (I've not come across that). Sometimes my teeth are sensitive when I brush them but I usually just ignore the pain and get on with it. If the pain is too bad I just rinse with mouthwash and try cleaning them the day after. I havn't had much pain with the TN today but yesterday was not too good. My flat is quite drafty and the draughts seem to trigger off the prickly electrical stabbing effects which go right up to my right eye. My bedroom is the warmest (and relatively draught free room). I'll check out Puritans Pride. Thanks for your advice and I hope you have had a good week.

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    • Posted

      I started out taking 500 mg of both the El Carnitine  & 500 mg of the turmeric.  With out worrying about taking to much.  It didn't help at night though. That's why I started taking the Carbamasapine. 

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  • Posted

    HI 

    you are welcome. Let me know how you go on won't you.

     

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