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Atypical TN, symptoms & treatment

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karen36710
karen36710

I would like to hear from anyone else who has been diagnosed with atypical TN, and I would like to know what their symptoms are and what treatment has or has not worked for them.  I was diagnosed in June 2016 with TN.  The onset was text book, electric shock like pains with immediate relief with carbamazepine.  Situation got worse when following my doctors orders on my initial prescription I increased the drug after 5 days and again after the next 5 days.  Then began 3 months of roller coaster of facial pain (rarely the electric shock like pain, but more like zaps/pinching, burning, soreness that ranged in pain degrees) and increasing the drugs and trying other drugs.  I had two very bad reactions to carbamazepine and to oxcarbazepine.  I am currently on gabapentin 100mg twice a day and nortripytline 10mg at night.  I am coping, but I have pain most of the day.  Sometimes "zaps", generally just a soreness (like someone just punched me in the face) and some burning.  At one time I was on 2700 mg of gabapentin and it didn't really help any more than the low dose I am on now....and the side effects were horrible.  I am on the list for MVD likely in May 2017...but I sure I will reevalutated before the surgery.  My MRI does not show a compression only the artery and nerve parallel to each other.  Although I am coping with the pain it is exhausting.  Based on what I have read I am wondering if the MVD will help...the neurosurgeon is hoping to to find the compression when he does the surgery.

I would appreciate hearing from anyone else who has ATN.  Thank you

0 likes, 21 replies

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  • Stupid1
    Stupid1 karen36710

    Posted

    Karen 3671 0,

    Please read my story go back to check on it and you will be able to read my story of what happened to me after I had MVD surgery.

    I can not read because I have double vision so I text Chat.

    Arcade Geary 300 milligrams before bedtime but I take 900 milligrams I have been up to the

    1200mgand Gabby and then Itakes oxcar 150,

    These two medications I take together I am still taking the medicine after my surgery waiting for my damaged nerves that cause my double vision or should I say double triangle

  • Stupid1
    Stupid1 karen36710

    Posted

    Karen 3 6170,

    I had MVD surgery on July 27th night 2016,

    My story is an Old Post please read go back to the old post.

    Debbie 900 milligrams before bedtime and one oxcarbazepine 150 milligram I take these before bedtime.

    My doctor damaged my nerve doing surgery on nerves I have double vision and this is what I really have, and this is for my neuro opthamologist I have double horizonal vertical, in 3D Vision.

    I got out of the hospital IAugust 8 2016,

    Monroe opthamologist has said he sees a bit of improvement in my eyes if I look straight ahead I I can see , vorrectly but if I lose concentration it's still comes back in double vision.

    My whole story of what I went through in the hospital is in older post.

    please go and read it.

    I had surgery and the Sox have stopped at 4:04 but still I get a bit of pain but it's very sllight.

    I can't drive my car because I may lose concentration so I wear a patch over one eye but I still can't drive my car because hubby won't let me.

    I am voice texting because I have the double vision and can't see the keys.

    If I was you I would get one two three four five and six different doctors to tell me that I have TN.

    And I mean neurologist neurosurgeons go to different hospitals.

    You can go back to older posts and you'll find a lot of people here that will give you other procedures before you have this major MVD surgery it is brain surgery the doctor damaged my nerves

    God bless

    us and keep us and give us peace

  • genny25800
    genny25800 karen36710

    Posted

    i will   pray for  you   believe me   i  know  how  it  feels  my  attacks would  come  in  my  ear just  one  side   then the  head attacks  2  yrs   i  took  meds  of  everything  nothing  work  i  guess  God  has  aplan for  me   because  i  was going  to  die   had   a  stroke   going be  parazlyed for  life   they   gave  this  injection  tpa   when  to  san francisco  hospital  for  a  week   walk  out   there    miracles   do  happen    i am  now  on  oxcarbazepine 150mg caramazepine 200   other  meds   no  more  head   attacks no  more  going  to  the   hospitals  anymore  i  do vitamins  b c d e    doing  a lot  of   exercise   zumba  i  am  so  happy     my  family  so  happy
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