1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

TN coming back on the other side...?

Posted , 8 users are following.

JFHS
JFHS

Has anyone had or heard of having TN one side then coming back on the other side?  I know it's a completely difference nerve down the other side, but it appears this might be happening...

Please can someone enlighten me...?

Thanks

0 likes, 17 replies

17 Replies

  • karen25221
    karen25221 JFHS

    Posted

    Yes my initial flare up was right side then it came back on left side but since last flare up.right side niggles
  • Glor888
    Glor888 JFHS

    Posted

    Hi,

     I've not personally had this happen to me or heard of it. But I do believe people do have it on different sides of their face as well as all over. So I wouldn't be surprised that you may have it on the other side now. I would treat it as such and act accordingly as annoying as it is. 

    Did you suffer with it for long on the other side of your face?

    Gloriana

  • karen25221
    karen25221 JFHS

    Posted

    Yes but I haven't at the same time although this can happen all be it rates I'm told
  • JFHS
    JFHS

    Posted

    It's actually my mum that suffers, not me and I am doing some research for her.

    She had it on her left side and had MVD, then about 4 years later it came back the same side.  So she had the op again.  And unfortunately is now numb on that side as the nerve was damaged the second time - but she is pain free which she obviously prefers!  She has just started to have some slight pains on her right side now, and I just wondered if she was being over paranoid (and scared obviously), or whether you can actually get it both sides...  I know the nerve is seperate, so is it bad luck or something else...

    Thanks for your replies so quick...

    Jo

  • RachisCool
    RachisCool JFHS

    Posted

    TN can rarely go to both sides but your specialist should confirm this.
    • maggie80535
      maggie80535 RachisCool

      Posted

      An MRI would show position of nerves on both sides of the face and so I have TN(in remission at moment due to acupuncture)  on the right ,and one day I may have it on the left also. Great news,! Not. We can only go onwards and upwards and keep positive.
  • Clunky
    Clunky JFHS

    Posted

    Hi,

    I have been diagnosed with bilateral TN which you are only supposed to get with MS and I do not have this, so the clinicians are puzzled.

    So yes it can be both sides and at the same time. I can vouch for that.

    However my right side is much worse and is the main issue.

    • Clunky
      Clunky RachisCool

      Posted

      well I have tried multiple meds, with minimal relief but heavy side effects. So currently I am on no medication except codryramol which takes the edge off when bad.

      I was advised that surgery will not help me as it's both sides. So I am waiting to see a facial pain specialist in 4 weeks who may be able to help.

    • RachisCool
      RachisCool Clunky

      Posted

      Bless yahh. It seems to me even the quacks don't know what to do for the best.
    • Clunky
      Clunky RachisCool

      Posted

      awful I know, but I am resigned to my fate with this horrid affliction. It has changed me as a person. I have had fleeting bad thoughts but would never act upon them.

      its great to know others understand but not that they also suffer.

      I am in some ways fortunate to have dealt with chronic pain before for 20 + years so I can carry on. however exhaustion creeps up and pounces occasionally.

      I'll keep you all posted what the experts say. Fingers crossed wink

  • eddie13
    eddie13 JFHS

    Posted

    Hi Jfhs,

    I've had it coming up on 8 years left side. I've had only a couple hits right side in all that time. But we agree. It can happen.

    eddie13

    • RachisCool
      RachisCool

      Posted

      It's miserable I know but why not have the op? I can't wait to get it sorted for good.
  • Loopylee
    Loopylee JFHS

    Posted

    I have TN on the left side, had 2 ops,waiting for pain clinic to get back to me etc but when i got my first scan i was told i had a blood vessel crossing the nerve on the right side too, i have had pain there a handful of times over the last 10 years but not near as bad as the left side.
    • Loopylee
      Loopylee RachisCool

      Posted

      Well My first op...MVD Micro Vascular Decompression did help a bit, second op Glycerol INjection did not work unfortunately, made the pain worse. I have two blood vessels crossing the nerve on the left side so the MVD sorted one vessel.
    • RachisCool
      RachisCool Loopylee

      Posted

      It seems my Doctor doesn't want me to have the op so is that final say or can I bypass his dicession? To them it's a constant cocktail of drugs for me.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.