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    • #20646

      Does anyone have severe TN with their MS where episodes cause severe facial pain and last for about an hour? I can find no information to support TN causes the type of reaction my husband has to it.  He has severe facial pain one side of face that doesn’t seem to be triggered by anything specific. He shakes uncontrollably when the pain is at it’s peak (but dr. said he isn’t haven’t a seizure). He gets very cold, can’t walk, sometimes his arm jolts out from the pain during an episode and almost passes out.
      He was diagnosed with MS in March of 2020. TN came out of nowhere in September 2020. He is on carbamazepine for TN and injections for his MS. Recently his medication was increased to the max dose for  his TN. And his MRI from October didn’t show compression or tumor around the Trigeminal nerve.
      Has anyone else experience this at all? The fact I can’t find anyone with this reaction is very unsettling.

    • #20647
      John Connor

      Hi Jess,

      You’re in luck, I do!

      Besides being the Co-Moderator on this Forum, like Ed my fellow Co-Mod I’m also a Patient Columnist on the main site. I’ve written innumerable  pieces about it:

      The Mouth That Roared and Roared

      Well, This Could Be the Last Time, I Don’t


      Sorry, This Is Not About New Year’s Resolutions. Get Over It

      When u get thru this lot pls add to this post and I’ll do my best to help.

      Cheers John



      Sorry, This Is Not About New Year’s Resolutions. Get Over It!





    • #20648
      John Connor
    • #20744

      Hi there Jess and John.  .OUCH ……. you describe excruciating  TN pain.  It sounds impossible to bear.   I used to get TN  pain  lasting several hours but luckily  not at the horrible levels you describe.. Although I did say to doc if I had a gun I would  have shot  myself. It was  simply to explain  the degree of pain, but  I found out later she apparently thought it meant I was suicidal.!!. I have been lucky as over the many years the  pain has virtually disappeared , slowly gettting less and less – altho  I  get bouts of   incredibly severe  itch of the lower jaw and inside the ear  – trying to stop myself itching it ( which starts up pain/ache ) is an ‘ interesting’ exercise.

      Hope you get get yours sorted properly.


    • #20754
      John Connor

      Hi All

      Besides the drugs I take daily  for TN: Oxcarbazepine [specifically for – according to Pain Consultant better molecule than  Carbamazepine], Baclofen [originally prescribed for neuropathic arm but handily a second line drug for TN, The two drugs work in harmony], Gabapentin [again originally prescribed for neuropathic arm but handily a second line drug for TN, Now on the max dose], Fluoxetine [Prozac] [this one out of left field – my own discovery! Weirdly made the diff when the TN began to cut thru – has worked for months. You can read the embedded tale in this link.   It also highlights Lidocaine Patches which  can actually calm intense attack  down!!!

      Cheers John

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