Trigeminal neuralgia

Discussion in 'Coping and Compassion' started by Poohbear5, Oct 17, 2009.

  1. Poohbear5

    Poohbear5 DIS Veteran

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    Is anyone here familiar with trigeminal neuralgia?
    My diagnosis is new and just trying to figure out how to get comfortable enough to get some sleep! The rest of the house is so quiet and peaceful, I was hoping the disboards would take my mind off the pain!
    Any tips are welcome.Thanks.
     
  2. rebster

    rebster Mouseketeer

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    I have not personally experienced Trigeminal neuralgia, however, I know it is extremely uncomfortable and can be very painful.

    Best wishes to you.
     
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  4. rpbert1

    rpbert1 DIS Veteran

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    My wife has had the symptons twice over the last 3 months. doctors just said neuralgia, but after looking up symptons it seems it is TN. My wife is on a lot of meds for other things, but after reading up on this , she took a med called Amytriptiline, for quite a while, she has been coming of it the last 4 months, and is now of it completly, but apparently this can help in a small dose. She was having problems with the med and this is why she came of it, the doctor gives her a tablet called Robaxin here in the UK, the last 2 times she had a flare up of this, and it does help, till the next time, but it seems to be very painful, she usually cannot get comfortbable to sleep and for a few days does not get much sleep because of the pain, until the tablets start to work.

    I can only sympathise with you and hope you get some relief quickly.
    :grouphug:
     
  5. tkbbmom

    tkbbmom Mouseketeer

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    I was dx w/ this years ago after being in pain for a number of weeks. I was given Tegretol --if I remember it correctly --which was a med given for seizure disorder. Within 24 hours the pain was gone. Unfortunately they gave me too much bec it builds up in your blood and by the time they had me back in the office my levels were at a toxic level. Once we got the dosage right I did fine as long as I stayed on the meds ----about 6-8 months later though I had to go to the dentist and they discovered an absesced tooth that needed a root canal. Shortly after the root canal the Dr. suggested that maybe that had actually been the problem and not true tigeminal neuralgia ---we tapered off the Tegretol and I've never had any problems like it since.
     
  6. mickeyboat

    mickeyboat <font color=660099>Nothing like the cream and choc

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    I was also incorrectly diagnosed with this last year. I tried two anti-seizure medications which did not provide any relief at all. I finally begged for a referral to a neurologist who did an MRI to rule out MS and a mass. It turns out that I had a cracked tooth and a terrible sinus infection (which is what I thought I had in the first place). Antibiotics and steroids fixed my problem - but I was in terrible pain for a long time.

    One not of caution - the anti-seizure meds had some emotional side effects for me. I actually was on the verge of being suicidal at one point, and I was incredibly paranoid. Be on the look out.

    There are some great TN support groups out there. I suggest you join one.

    Good luck.
     
  7. Poohbear5

    Poohbear5 DIS Veteran

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    After a year of visits to dentists, docs, neurologist, I had a root canal yesterday. They still aren't sure if that's the problem or it is indeed trimgeminal.

    The neurologist thought maybe the dentist damaged a nerve last year at this time when the pain started and he kept passing me back to my family doc. The damaged tooth nerve is right along the trimgeminal nerve, so only time will tell.

    Thanks for all the responses and good luck to those who are suffering from the kind of pain I've dealt with this past year.
     
  8. jojo9610

    jojo9610 Mouseketeer

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    I was diagnosed with TN about 7 years ago. I had been through all of the anti-seizure meds and when they finally stopped working I had a Microvascular Decompression. That's where they put a teflon pad in between the twisted blood vessels next to the Trigeminal Nerve. My surgery was successful and I have been in remission for the past 5 years. If it ever comes back I wouldn't hesitate to do it again.
     
  9. LikelyLynae

    LikelyLynae Mouseketeer

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    Wow this is an old board, but I have TN and have had the symptoms for it my whole life. The medicine I was on made me feel like a zombie, so after some research I started the Keto diet which has greatly lowered my “attacks” and has greatly improved my life.
     

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