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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

21 Replies

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  • Baudwalker
    Baudwalker karen36710

    Posted

    Hi Karen

    Sorry to hear you had troubles with your medications. I was fortunate enough to be able to tolerate 600mg of Oxcarbazepine four times a day so I didn't suffer from the issues you did.

    I had 5 (FIVE) MRI's, a PET Scan (with radioactive contrast), countless CTScans and numerous Ultra Sounds. The results were discussed by a number of specialists as they have a weekly phone hookup to discuss thier cases and get opinions from many knowledgeable heads at once. Being in SW England specialists aren't very think on the ground so these weekly phone hookups are a real benefit to the patients.

    I was termed a 'MYSTERY' in their discussions and it took longer than normal for a decision to me made about my treatment. Fortunately they got it right and the removal of a Parotid gland with a tumor has been fantastic.

    Reading forums and specialists sites just having blood vessels 'close' to the nerves can cause the issues we all understand. Others have the blood vessel twisted 'around' the nerve to cause the problem. 

    I would exactly the same as You Karen and make sure every option has been fully explored before I let anyone make a hole in my head. By the same token there are many anecdotal comments where MVD has been absolutely successful. I wish you all the very best whichever way you go and hope it achieves the result you are looking for.

    Take Care

    Baudy!

     

    • karen36710
      karen36710 Baudwalker

      Posted

      Thank you so much for your detailed reply.  I keep on wondering if the diagnosis is correct.  I also forgot to mention that I get twinges on the other side of my face...first I thought I was crazy but they are there.  I am going to make sure that they repeat the MRI and do other tests before I proceed with any surgery.  Thank you again and I so glad things worked out for you.
    • chantell28219
      chantell28219 Baudwalker

      Posted

      Hi Baudwalker, can I ask what hospital your seen at? Your treatment seems very thorough...for me my experience has been very negative I feel like I'm been fobbed off because nothing is showing up on my mris..I have crushing burning tingling squeezing pinching type sensations day in day out but the weird part of it is that my nerve pain us in my nose nasal passages roof of mouth teeth as well as my jaw cheek ear and back of head...I'm at my wits end and not sure what to do or where to go anymore. I've seen facial pain team at queens square neuro and neurosurgeon who says I have sluder's neuralgia and has referred me to pain clinic. My doctor is now turning on me I feel so down its affecting me mentally as I don't feel supported by any specialist I'm utterly terrified. Sorry for long post I hope your all blessed with good treatment and pain free days xx

    • Baudwalker
      Baudwalker chantell28219

      Posted

      Hi Chantell

      Sorry to hear you are having these issues both the symptoms and the doctors too.

      I am way down west not too far from Land's End and my  nearest hospital with the expertise to treat me is in Truro. They in turn have these weekly specialists phone hookup with Plymouth and I think also Exeter when needed. That puts more heads together when they have curly ones.

      My MRi's didn't offer too much either but the PET scan showed a liuttle shadow on the left parotid gland. Part of the collection of glands that handle the saliva we all produce. It is somewhere buried in or behind 'Meckels Cave' and this puts it deeper in and difficult to see with the MRI.

      So mine was because of a tumor but the symptoms were the same because the tumor was attached to the same nerves that have been identified as causing these issues. At the start it was 'Oh Yes... Bell's Palsy',just wait and it will go away was the classic response.

      It took a lot of quite open and frank conversations but once the GP got onside (he knew 2 thenths of three fifths of bugger all about TN) we worked through it. I would chase the information and pass it to him and he was then able to give a much more precise response.

      Seems to me to be the time to book and EXTENDED appointment with your GP, arm yourself with a written list (you won't forget anything that way) and get an answer for each and every question. If you are as frustrated as you say then you won't be doing any harm by potentially upsetting him / her. I would be careful to explain your frustration and your feelings first and then ASK he hears you out to try and find a solution. Most GP's will respond positively and once You are finished he should be much more aware of exactly how your are feeling.

      Think it all through and move forweard with a positive and determined attitude.

      I wish you all the best

      Baudy!

       

  • sam_90350
    sam_90350 karen36710

    Posted

    Hello

    Iv been suffering with atypical facial pain since 2013

    It started in my back gums top right.

    I saw multiple dentists but they couldn't find anything wrong

    Over the years the pain has spread to all my back gums and inside my inner cheeks

    The pain is horrible:- numbness,burning,pulling.feels infected..and its CONSTANT

    The only time it goes is when I sleep

    Iv had MRI scan.nothing found

    Iv had Botox.did nothing

    Iv been on medication.

    Citropram gabtrien. cant spell it

    I'm now on nothing except paracetamol and ibrofen

    And I have mouth guards

    I have forgot what pain free is.i struggle to talk now because it's so painful

    It's all I think about the pain

    I hate it and trying to explain it to someone is so hard when the expert can't find anything wrong

    Sorry for the negative reply

    But it's a nightmare

    • karen36710
      karen36710 sam_90350

      Posted

      No, yours was not a negative reply, it is reality.  While I do not think at this time I am as severe as you are, I know it is bad.  Yesterday was not a great day.  The pain was pretty constant and exhausting.  I try to remain strong and active, but the pain affects everything I try from golfing to knitting and of course interactions with people.  I was happy to go to bed last night and to sleep.  I slept 9 hours.  I am using capsaicin cream.  Sometimes it burns but it is a different feeling from the pain, and I think it is helping to dull the pain.  Note it takes at least 3-4 weeks for it to start to work.  Also nortriptlyine really helps the other meds work...and I was a real doubter about this till I missed a dose and the pain was much worse the next day.  My neurosurgeon told me that the only hope is MVD, that none of the other procedures will help.  Hang in there and thank you for your reply...your situation is the closest to mine of all the replies so far.
  • Tnhurtsme
    Tnhurtsme karen36710

    Posted

    hi Karen

    I am on 900 mg of gabapentin an im trying amitriptyline 10 mg it's really helping with my pain is thought I had tn2 atypical but I think my is more tnp neuropathy more or less mine burns crushing feels like a vice grip holding your face with teeth pain an lightning strikes constantly hitting you but so far with this new drug interactions have had some low side effects not much really some light muscle pain with aurora feeling an sleepy at night when I take it

    • karen36710
      karen36710 Tnhurtsme

      Posted

      fyi apparently the nortriptyline is supposed to be better than the amitriptyline...you might want to research this yourself.
  • Stupid1
    Stupid1 karen36710

    Posted

    Hello,

    Karen 36 710

    Karen seek out other Neurologist and neurosurgeons, get about six opinions b4 u get MVD surgery. I had the MVD surgery and I wish I had made it my last choice find Dr and find out if they can give you the other options before you have MVD surgery.

    God bless,

    us and keep us and give us peace

    • karen36710
      karen36710 Stupid1

      Posted

      I do not know where you are located...it seems that most of the people on ths site are from Great Britain.  I am in Ontario Canada and 2nd opinions are not easy to get and are resisted by family physicians here.  Apparently if you see a second specialist the first one will not see you again.  Very frustrating and very scary.
    • Baudwalker
      Baudwalker karen36710

      Posted

      Hi Karen

      I think the diversity of the group is the best thing for everyone. I find most of the US participants have their numerical zipcode with their name so for those in the know their approximate location can be seen. I may be wrong (again)!

      I fully understand your circumstances and no doubt the ever present threat of litigation over that way is part of the attitude. Here is where your RESEARCH is important so you are as up to date as you can be with regard to the cause and treatment of this problem. That way you can discuss it on a level that YOU fully understand and be certain of the medicos knowledge and expertise.

      Just look at the diagrams of where the nerves are routed, 3rd, 5th and 7th in the main and You will find there are quite a few different areas where the aggravation can be caused. Not a lot of use treating one area if all of the rest have not been ruled out. Just how far you will get with these questions will depend on how quickly your consultant gets his/her back up! At least if you are happy all other options have been eliminated then you can progress with a lot more confidence.

      As with most medical procedures there are few guaranteed results but the only other option doesn't bear consideration.

      Good Luck in your endeavours

      Baudy!

       

    • tlynn
      tlynn Baudwalker

      Posted

      Hello, my daughter has this unrelentless, unforgiving, cruel, horrible pian 24/7 but on both sides of her face.  Could it be a tumor on both sides?  Any other possibility? This is a symptom that distinguishes the condition perhaps from the typical TN..it is chronic--never ending.
    • Baudwalker
      Baudwalker tlynn

      Posted

      Hi tlynn

      I would never ever offer any type of diagnosis I am afraid. There are just so many variables to take into account the best person to ask is your GP and any referred consultants.

      I can only harp on about RESEARCH and then MORE RESEARCH and from there off to the medical experts. The more knowledge you have, the more questions you can have answered, and therefore the better the advice the trained professionals can provide.

      Don't be afraid to keep asking until you get a satisfactory answer. Not necessarily the answer you 'want', but one YOU feel is based on all of the available facts.

      It took 3 years to identify mine so getting relief from medication is just as important. Your daughter needs relief while the search for an answer to the problem goes on.

      I wish you both all the best for the future.

      Baudy!

       

    • sam_90350
      sam_90350 tlynn

      Posted

      Hello tlynn

      Has she had a MRI scan yet

      I have exactly the same horrendous pain 24/7 on both sides of my face.it feels like it's getting worse everyday

      The only thing I found to change the pain type is to put my dental mouth guard in.relaxs my jaw for a hour till pain intenses.when it's intense i suck on a ice cube or put hot water bottle to my face.

      If your daughter has any help tips to ease pain please share

      Thank you

    • patyrod
      patyrod tlynn

      Posted

      I have trigeminal neuropathy.  It is constant bilateral numbness and intermittent pains.  My face and mouth feel like they are in an iron mask.  I have had it for a year.  Apparently, it is an extremely rare condition, much rarer than trigeminal neuralgia.
    • Tnhurtsme
      Tnhurtsme patyrod

      Posted

      what does your pain feel like mine is 24 7 an feels like lighting and pressure sometimes burning pain the teeth pain is the worst
    • tlynn
      tlynn Baudwalker

      Posted

      Thank you Baudwalker--I do alot of research and what I am seeing is that it's a condition with no answers or cure. Her suffering and pain is intolerable as all of you experience. 

    • Baudwalker
      Baudwalker tlynn

      Posted

      Hang in there tlynn.....

      Keep up the effort and keep searching for those elusive answers.

      Pester the medicos, be a nuisance, and always support your daughter and you  WILL find the answers. BELIEVE IT!

      Baudy!

       

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