Newly Diagnosed of TN

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ive been recently diagnosed with having TN after experiencing terrible pain to left side of my face involving the teeth, gums inner and outer cheek and deep inside my ear. The comes on after triggers of eating and drinking and cold air blowing on my face and a lasts a few minutes at a time. Its been relieved after a couple of weeks taking carbamazepine gradually increasing to 600mg has made a difference and i can finally take hold of my experience and start some research

On reading about this condition a common feature is a trigger point on the face , or a trigger by light touch. I dont have a trigger point on my face. i do have sensivitity on the inside of my face . Also light touch doesnt trigger. Ie lightly stroking my face.

im questioning my diagnosis ???

My dental health is good confirmed by my dentist. I also have cleareness from ENT.

Should i be questioning my diagnosis?

Much appreciate your experience

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  • Posted

    HI I WAS DIAGNOSED with TN in 2013 after a year going back and forward to doctors and dentists. i was then sent to a neuroligist who then sent me to MR Suttner an amazing neurosurgeon who did an operation called microvascular decompression which he put a little sponge between a vain and nerve in my head. It was fabulous i could eat, talk and the pain has gone.

    Sorry for the long reply hope you get pain free. Jen

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  • Posted

    who and what diagnosed your TN?

    A NEUROLOGIST I hope.

    If the drug works like it does mine it probably is TN.

    Any facial numbness as well on the same side. I have that as well. You are getting a good drug for it.

    I use 600mg per day too but even 800mg with Ibepofin 300mg

    Night time I also 10-20 mg of Amnitriptalline.

    If it was a family doctor they were good to help but a NEURolGIST NEEDS TO BE CONSULTED.

    Any MRI RESULTS yet?

    My were negative which was good news. Now investigating a temporal mandibular join problem on the same left side of the TN.

    Upper left teeth ache most of the time. LEFT eye and ear too.

    All 3 branches involved for me.

    Suffering over 2 years now.

    very tough to cope with at times. I HAVE GOOD FAMILY SUPPORT AND A WONDERFUL WIFE.

    STILL LOOKING FOR THE CAUSE!

    good luck!

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  • Posted

    i initially went to my dentist convinced several teeth needed pulling. She teeth gums and jaw and soft tissue were healthy and suspected TN which was the first i new about it. She arranged a referral to max facial were i was seen by a dentist and Max fax consultant . They diagnosed a probable diagnosis of TN. but before i had this appointment i ended up in AE strugling with pain. A doctor there suspected TN. and started me on Carbamazapine. My GP has steadily increased the dose to 600mg which appears to be working some pain at times but nothing more than sensitive teeth pain when drinking warm fluids and eating.

    I now believe i had thus a number of years ago when i begged for a good tooth to be removed and also in colder months when i need to cover my mouth. But nothing like this last month.

    At this point ive not seen a neurologist or had a MRI. The NHS as amazing as it is has a way of following up on these things.

    Thank you both for your reply.

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    • Posted

      Hi there, i was were u were several years ago, i also went to the dentist, wanting him to pull a tooth, but he said he could pull all my teeth and it wouldnt help he thought it was trigeminal neurelgia, which it turned out to be i tried several drugs carbamazapine being one of them which worked for a while....i have now seen a neurologist and had an mri done, they are sending me to toronto to have a procedure called gamma knife surgery which is a radiation beam that goes to the nerve and severs it so u dont have the pain anymore, i go for it in a week.....hopefully this helps you....good luck !!!!

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    • Posted

      Thankyou

      So its not unusual to be without a trigger spot on outer face and not to trigger by brushing my cheek gently with my hand ??

      All my sensitive areas are inside my mouth left side only.

      is it unusual to have a kind of numbess feeling in cheek? like the feeling when novacaine wears off

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    • Posted

      No that is normal, mine is mainly inside also, i can hardly brush my teeth, even water hitting it in the shower hurts it, ...mine is on the left side , i have no numbness but the surgeon asked me if i did so it is something that does happen, It acts a bit different on each person. They cant do a whole lot until u get an mri done, just ask the family doctor for one..Good luck message me any time u need to i know how awful this disease is.....

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  • Posted

    Hello there,. Personally I wouldn't doubt your diagnosis. I've had T.N for many years and have had these symptoms as well as many other s from time to time. The symptoms you describe do not seem to have a trigger spot although most others do. I found that they seemed to be mainly triggered by the process of eating and seemed to be deep within the inner cheek and , although extremely painful, were not a sharp shock but rather a slow deep pain increasing pain - difficult to describe and certainly most unpleasant. It seems that T.N takes many forms of facial pain.

    It's always a good idea to ask to see a neurologist if you haven't already done so and ask for an MRI scan which should confirm the diagnosis. I find that Carbamazapine is the very best that medication can offer for my condition , but there are other meds and procedures available so go down every avenue. Also its a good idea to join the FPA ( Facial pain assoc.)

    Good Luck, Gill

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    • Posted

      thanks Gill

      yep its all inside my mouth other than around my cheek bone that feels like a screw driver being screwed in my face. My teeth feel like they are being drilled and my flesh inside my mouth being burned. layer by layer. At times the pain radiates to the side of my nose outside skin and temple But thats at its worse. Attack last a few minutes with my arms wrapped around my head and my head in a pillow. I cant scream i cant talk i dont want to move a single each of my face . The role and my salvia drips.. When its over im left tramatised and in fear of the next time. Carbamazapine is wonderful and touch wood ive been free of these attacks for 4 days. I get pain if ive chewed something or drank very warm tea. but the pain is nothing like its been and i can manage it. I dont want to go upto 800mg to be free of it.

      ive just been introduced to this diagnosis and its scary to think that this can get so much worse. I read the Nhs web site info and the NiCE guidlines. Hoping remission comes and stays

      Will looking for a referral to Neuro when i see GP on my review also will ask Max Facial to refer me when i see them

      Thanks again

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    • Posted

      thunder bolt headaches to the top of my head are the worst. MEDS gets rid of those most times.

      so bad one night they woke me up and went to ER whete they gave me 25mg of Amnitryptaline for two daus and rxtra strenght tylonol with Ibeprofon.

      finally some relief. ALL started from the cold air in a hockey area.

      HOPE YOU get Nurologist soon and mri.

      GOOD LUCK

      DOUG

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    • Posted

      Hello Again,

      Yes. Your symptoms are exactly like mine . I've only had this sort of attack once recently and it does leave you drained and in fear of the next attack. I usually get the classic 'electric shock ' type of pain. Please don't despair! I know it's very depressing to read about this sort of condition but you have yet to see a neurologist who is very likely to suggest several types of treatment which could help. Don't forget that a little knowledge is dangerous and wait to see what he or she has to say. I've had this for 20 years and I'm not dead yet! The upside is that it's not terminal and there is a life still to live.

      This is an excellent site to visit but you must remember that people usually only use it when they need support and it's human nature to forget about it when the symptoms pass.

      Please keep in touch and let us know what happens.

      God Bless you,

      Gill

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    • Posted

      So glad that things are happening for you . Don't forget that there are often long remissions whatever your results are. Do let us know how your appointments with the doctor and the neurologist go and the treatments they suggest and don't forget to tell them about the worries you have - your mental well-being is very important too.

      Best of Luck.

      God Bless, Gill

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  • Posted

    Hi,

    I too have pain in all three branches of the nerve on my left and the right side, I often get migraines about 2 hours after an attack. I found some research papers which describes Tic-migraine (or Migraine-tic) syndrome, this perfectly describes my experience of TN followed by the migraine. I have attacks of TN intermittently throughout the day. I get all manner of pains including the typical electric shocks. Triggers vary from eating, talking, cold, wind, showering and sometimes touching certain areas of my face, I also get pain for no apparent reason! The left is more problematic than the right. So, to answer your questions, yes you can experience TN without triggers and yes it can vary in nature. Numbness, tingling and burning are common (my teeth are sometimes on fire!), I have these before or after an attack or because I need to increase the dose of the drug/drugs.

    I'm really fortunate in having a fantastic GP and Dentist. I've had consultations with all the relevant specialists to rule out eye/jaw/dental problems and the diagnosis was confirmed by a neurologist.

    Do some research and ask for a referral to a neurologist, and insist on a MRI scan.

    Mine were inconclusive, so no surgery for me, yet! Carbamazepine is the standard treatment. I also take Amitriptyline and Gabapentin regularly, along with a pharmacy of analgesic drugs (which really only diminish the pain from a 20-25 out of 10 to a 17-19 out of 10 😫😫😭.

    Try using a hot water bottle, cold packs, application of pressure to the site of the pain, try all sorts and if it helps do it when necessary. Set an alarm to ensure that you take your medication on time (best advice I was given!).

    Wishing you a less painful future 😊

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    • Posted

      Hi Susan, i had tried everything u have, nothing worked totally, i ended up in emerg, crying, they tried everything nothing would touch it, they even gave me morphine as a last thing to try, it helped me till i saw the neurosurgeon again who upped my doseage so like i said i am waiting my surgery, next week. One thing great about this surgery is no pain, they just use a beam of radiation....I am in so much pain i will try anything. There is a chance i will no longer have any pain .....YAHOO !!! DONE IN TORONTO AND THE STATES.....

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