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My TN is back! 😟

Posted , 4 users are following.

Glor888
Glor888

Hi fellow sufferers. On Friday I had the dreaded shooting pains travelling through my lower right jaw. I thought oh no here we go again.

I've been a sufferer for over twenty years and for me I had TN for 9 months then remission for 9 months. Then suddenly a six year gap and nothing. I actually believed I would never have TN again. Then last year it returned with a vengeance. This ran for Ten months, solely because my usual Tegretol no longer worked and I was put on different other tablets until Pregabalin worked. I've only been in remission for about 5/6months. I guess the Pregablin wasn't going to stay in my bloodstream long enough, because I don't think it was as strong as Tegretol was. So we'll just have to see how long this episode lasts.

im presently having to start off gradually with 50mg twice a day for about a week and if I still feel the TN coming through then the dosage will be increased.

I hope most of you have finally found relief with your TN.

Chat to you soon.

Kind regards

Gloriana

2 likes, 9 replies

9 Replies

  • eddie13
    eddie13 Glor888

    Posted

    Hi Gloriana56563,

    I see you as a regular on this site. I know all about the ups and downs, and the cyclic nature of this affliction. What I see and tell myself is there is always something a whole lt worse.

    In 2013 my regular 600mg / day carbamazepine (tegretol) would no longer do the job. I increased to 800 / day and that has been "covering" as my neurologist says. I found it important to space evenly throughout the day, so it'a a 200 every 6 hours as exactly as possible. I use alarms, one at 5am.

    But the nerologist is the expert, not myself. Every case is different. I've been at it since 2007.

    eddie13

    • tanz69
      tanz69 eddie13

      Posted

      Hi Eddie, have you ever tried to come of the Tegretol? if so how long for? do you still have pain?
    • Glor888
      Glor888 eddie13

      Posted

      Hi Eddie

      You're  right there is a lot out there that is worse. But saying that they reckon TN is the worst pain out of all. I think we just have to get used to this problem and plod on regardless. I'm just thankful that I get remissions in between, as it's such a relief to have a break from it all.

      Have you tried weaning yourself off Tegretol gradually to see if you're still in pain? 

      Gloriana

  • tanz69
    tanz69 Glor888

    Posted

    OH Honey, Im sooooooooooooooo sorry to hear this, I really thought you were done and dusted with this for good. Grhhhh makes me so angry that once it has a hold on you you just cant get away..you can run but you cant hide eh!!

    What did you do that brought it on? or what have you been doing, i.e visiting a dentist?

    Now Im starting to stress that when the Tregretol is out my system for a few months, mine might return :o(((

    Hang in there and I'm thinking of you xx

    • Glor888
      Glor888 tanz69

      Posted

      Thanks Tanz. I know it's a right pain lol.

      i can't think of a thing that brought it on Tanz, and no I wasn't visiting the dentist, Nothing at home to trigger it off either.

      You may be lucky Tanz and have a few years remission like me. 

      Chat soon.

      Gloriana

       

  • Valkyrie
    Valkyrie Glor888

    Posted

    Hi Gloriana,

    How horrible for you after 6 lovely months without

    Tn pain.Its a sad and nasty thing we have. Wondering if the next drug will work and if it does, how long it will last. I had the Gamma Knife 4 months ago and was told it would take anything from two weeks to a year to help me. I feel I am now worse than before. Like you, the Tegretol seems to have stopped working and at present, i have just been through two days of being unable to eat or drink. This seems to be easing a little now but I have asked to see my neurologist for a drug change. I hope he knows more than he did last time I went.

    I feel for you.

  • eddie13
    eddie13 Glor888

    Posted

    Hi Gloriana,

    Weaning off Tegretol is not an option for me. Surgery is not an option for leasons on the brain. Stuck with the pills. They work for byfar the most part, so I don't mind.

    eddie13

    • Valkyrie
      Valkyrie eddie13

      Posted

      Hi eddie 13,

      Do you take anything along with the Tegretol? Also, if you don't mind the question, how much do you take per day?

    • eddie13
      eddie13 Valkyrie

      Posted

      Hi Valkyrie,

      No problem giving information. I started in 2007 from the ER at 200mg / day. Over time with Neurologist I've increased to 400 then 600, now since Jan 2013 800mg / day. I've found it critical to distribute evenly throughout the day, so it's a 200mg pill every 6 hours. I use alarms. I take nothing else along with the Tegretol generic Carbamazapine.

      I'm 55. The root cause is MS leasons on the brain.

      eddie13

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