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I Have Trigeminal Neuralgia

A Trigeminal Neuralgia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Trigeminal Neuralgia. You're not alone. 166 People

    I have recently just been diagnosed with this

    horrid disease. I thought it was a toothache. Before I went to the dentist though, my husband told me to go to the doctor, it could be my sinuses since it was all the way up in my face. So I went and he said, did you look this up on the internet? I was like no, he said...you...
    lilkajira79 lilkajira79 31-35, F 4 Responses Jan 13

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    Dental Procedure Gone Wrong! 2008

    My experience originally started with a routine dental cleaning. The hygienist chipped a tooth while cleaning and the dentist said that i would need to come back to have that taken care of. He said it wasn't a bad chip and that i didn't need to rush back. a couple months went by...
    monchichi626 monchichi626 31-35 2 Responses Apr 11, 2011

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    I Hate It!

    i have had tn for 4 years now since i was 21, its got to the point where i am in constant pain all the time, right at this moment i haven't slept for 4 days. i am getting so down coz i am a single mum and i literally cannot function when i am like this. i hate the fact that a lot...
    jojo2312 jojo2312 26-30 12 Responses Jun 17, 2009

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    Not Sure If I Have TN

    Hi, about a year ago a started feeling some weird electric shocks on the left side of my face, mostly everytime i was going to use a towel to dry my face after a bath or in the morning after washing my face. Just recently, the electric shocks started to get worse and to move to...
    Isrametal69 Isrametal69 22-25, M 2 Responses Feb 3, 2013

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    I Do Things I Would Never Do....

    Well, the pain got really bad, starting last night..... I do things to get relief that you wouldnt think I would ever do..... That I never would, if I wasnt desperate for relief.... Its wrong to take medication not prescribed for you. Its totally destructive to my med plan...
    trugritt02 trugritt02 26-30 4 Responses Jul 11, 2011

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    Looks Like I Have Found A Cure...

    I developed TGN 13 years ago - and after a series of dental misadventures - I was at my wit's end - and had already selected a tree to crash the car into !(and was developing serious drug reactions to tegreto and panadol).However - in a more lucid moment I remembered that there...
    HughJ HughJ 66-70, M 4 Responses Jun 10, 2011

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    Re: The Trigeminal Neuralgia Pain Is Back...

    My story is similar to so many I have read:  my first occurrence was in 1996 or 1997 when I was in my early twenties, after two root canals and one extraction of a wisdom tooth that was so close to a nerve that my dentist insisted an oral surgeon pull the tooth.  He feared if...
    honeygirl0511 honeygirl0511 31-35, F 7 Responses Jan 18, 2011

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    Trigominal Neuralgia

    I have had trigominal neuralgia for almost 4 years now. The pain starts when I woke up in the morning and stops when I fell asleep at night. I can't take medicine it makes me drowsy and doesn't work with my line of work. The best advice I can give is the get eight hours or more...
    chrisi1313 chrisi1313 26-30, M 9 Responses Jun 10, 2010

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    More Minute Counting.

    Woke up to a phone call from my pain management doc..... they have pushed my nurses appointment back until thursday..... which means, my pain medication refill isnt going to help me get through today, or tomorrow, or the next..... im on my own.... so, im sitting very still, with...
    trugritt02 trugritt02 26-30 1 Response Jul 11, 2011

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    I Discovered I Have Trigeminal Neuralgia

    In the Fall of 2008, shortly after I had received my annual flu shot, I developed tingling all over my face, particularly around the edges of my eyes, nose, and mouth.  It was eased by warm compresses.  That lasted about two weeks and was followed by a couple of weeks of...
    carolyn630 carolyn630 61-65 5 Responses Jan 12, 2011

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    I was going to college to study Occupational

    Therapy Assistant program. I was getting a kind of "shock" in the right side of my mouth. I was age 47. I looked it up in my Anatomy book & read about the trigeminal nerve. I decided @ that time I was being silly so I called my dentist. He confirmed that I was right...
    Vickie1551 Vickie1551 61-65, F 2 Responses Feb 14

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    A story of hope. It started out of nowhere,

    a pain so bad that I had no clue what to do or how to subside it. There was no pain medication, massage, balm, or anything to sooth it. First I thought it was a migraine. But it felt different. One thing is to be bed ridden, this was worse, it was never ending waves of pain. I...
    flipmoto flipmoto 31-35, M May 27

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    31 Year Old Mom With TN :(

    I was diagnosed with TN in 2006, although I actually started having symptoms in 2003. I have gone through two Microvascular Decompressions (both unsuccessful) and a Gamma Knife (successful!). Its been almost 4 years since the gamma knife and the symptoms are starting to return...
    MegMeg6605 MegMeg6605 31-35, F 1 Response Feb 16, 2013

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    Recently Diagnosed With TN

    I went for a root canal 3 months ago. I haven't had a pain-free day since the dentist drilled into my tooth 3 months ago. I went back 4 times and the pain just continued and continued, finally having the tooth extracted 2 months ago. It didn't help the pain. Now, the adjacent...
    callie2150 callie2150 61-65, F 3 Responses Sep 17, 2013

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    How I Suffered For Years And Became 'pain Free' Of Trigeminal Neuralgia.. Yes...There's Hope!!!

    Hi there, I don't know if this is going to help anyone, but I had TN for 12 years!!! And 4 years ago had a final and must add...'successful' operation at The Walton Neurology Centre, in Fazakerley, Liverpool UK... No more pain thank God!!!... Before that I had 3 temporary...
    eddietnfree eddietnfree 41-45 3 Responses May 7, 2011

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    18th March 2012 Worst Day In Hell "tn"

    I was diagnosed with TN on the 18th March but the build up started the day before. On the right side of my mouth (to the back) I became agitated with that area thinking a toothache or an abscess was coming on. Took 2 paracetamol tabs 4 times that day and tried to sleep the...
    toa27annz21 toa27annz21 26-30, F Mar 18, 2012

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    Acupuncture Cured My TN

    Over two months ago starting in early November 2010, my TN started as toothache, stabbing, burning pain, and numbness on my left face.  I couldn't talk nor sleep because of the pain. Visiting the first dentist,she thought that it was caused by my wisdom tooth, and asked me to...
    quynhdn quynhdn 41-45 2 Responses Jan 9, 2011

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    Re: Very Strange Episode Of Tn...or Frustrating...or Both...

    I am beginning to wonder if there will ever be a way to gauge if the TN has returned or what to expect when it does. The last several relapses (since 2008) were on the left side of my face, though years before the pain was on my right side at various times. A week or so ago...
    honeygirl0511 honeygirl0511 31-35, F Sep 25, 2012

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    I Have This Trigeminal Too

    I have this Trigeminal for about 1 year now.. I had Tregetol for medication. I was wondering does anyone know what kind of food do we have to avoid since we have this painful desease.. Can it be cure.. Do i have to hv this painful thing for the rest of my life? I certainly hope...
    Feb 18, 2013

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    Made A Video Of My Story.

    I have had TN for 30+ years. I posted this video today which gives a small look inside my experience. http://ireport.cnn.com/docs/DOC-1032817
    leejcaroll leejcaroll 56-60 Sep 7, 2013

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    Trigemenal Neuralgia Possible Cure

    1 year after being diagnosed with TN, I underwent gamma knife surgery. It offered relief after a few months. I could live for months free of pain and some months pain level 5/10, controllable with tegratol. But within 3-4 years, my dosage for tegratol had to increase in order to...
    BobDu BobDu 31-35, M Jun 22, 2013

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    I have Atypical Trigeminal Neuralgia (ATN).

    I was first diagnosed about eight years ago. My TN went into remission for about five years and came back at the beginning of last year. My pain is on the left side of my face. It originates in a bottom left molar. It radiates to all of my teeth on that side, into my jaw, cheek...
    justjane37 justjane37 36-40, F Feb 8

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    I Have Bad Neuralgia That Is So Painful

    the jaw pain, neck pain, is hell... its all around my head and teeth...and nose, and throatI get pain there when stressedI get pain all over the body and its only the massage guy that can really help get rid of some of itI find when I am like this I use a heat pack and massage...
    czaristacrystals czaristacrystals 36-40, F 3 Responses Dec 14, 2011

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    Having a flare up tonight.

    A while earlier was scared I might have to go to ER. But never want to do that, it's the rare dr that knows how to treat TN. Right now I'm trying to get my insurance to pay for MVD surgery. Anyone out there that remotely knows what I'm talking about?
    itskismet itskismet 41-45, F 2 Responses Mar 29

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    Intense Today

    i was diagnosed in 2006 with this dreaded disease. I am luck for i do have periods of time when i really don't hurt too much.  But today the pain is intense and i just want to lay down and cry I can't tolerate the meds.. tegretol and neurontin made me so sick. My doctor tried me...
    moonstar312 moonstar312 36-40, F 7 Responses Oct 26, 2011

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    I Researched, Survived, And Overcame TN (NO PAIN)

    I'm going to tell my story so it will be kind of long, but has a great end ing..promise;-). In 2011, at age 29, I noticed a sharp pain when I brushed my teeth. At the time, like many others, I assumed it was dental related. I went to the dentist and they found nothing wrong. As...
    IsurvivedTN IsurvivedTN 31-35, F 1 Response Jul 12, 2013

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    Worst Pain Ever

    I have trigeminal neuralgia. I have had it since childhood or as long as i look back and my memory serves. The location for me is just above the right eye. When i was a child i used to think this is what people call as headache ( i actually never had a headache until few years...
    darkknight3 darkknight3 22-25, M 3 Responses Jul 13, 2012

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    Trigeminal Neuralgia

    i am 34 and am in some real pain just now,have been for about a month this time.As i type this with one hand i am clutching the side of my head and pressing so hard because of the pain. I think i have had TN since i was a teenager as i can remember getting these pains then too...
    DirtyDawg78 DirtyDawg78 31-35 2 Responses Mar 3, 2013

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    Never Knew Pain Like This

    I am shocked to know that I join a large group of people who share this horrible diagnosis. I had no pain and went to a routine dental appt. After 3 hours of drilling and leaving in tears I have not had a pain free moment since April 3rd 2013. I went to a dentist or oral surgeon...
    Teemurray Teemurray 51-55, F 1 Response Nov 9, 2013

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    So Glad I Found This Group

    I used to feel like such a freak. Like I catch all the weirdest conditions. It's comforting to know that it's not that unusual, that I'm not alone. I was first diagnosed with it in middle school. I was twelve or thirteen. I remember it was awful. It started out with me feeling...
    deadmoon deadmoon 18-21, F 3 Responses May 19, 2013

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    I Thought There Was No One To Talk To!!!!!!!

    When I was first diagnosed with this horrid disease two years ago, I was devastated. I didn,t know who to talk with, besides my neurologist, because how could anybody understand this disease unless they had it. I am very glad, I have found this site, and read so many of your...
    Debbie1999 Debbie1999 56-60, F 1 Response Aug 14, 2013

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    My Father

    I do not have TN but I am affected by it because my father has it. It has caused me and my family great stress. Not only from seeing my dad in pain. But because he is also a diabetic. The pain hasn't been so bad until a week ago. He refuses to talk or eat. He's surviving on...
    TwoTearsInABucket316 TwoTearsInABucket316 31-35, M Feb 5, 2013

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    Sadness

    I am a 19 years old I have been having attacks for the past 6 months started out of the blue and hit me like a tonne of bricks i didnt know what to do ? Or how to stop the pain ? I struggled to get out of bed, and shut everyone out to the point i tried to kill myself but my...
    carlyjane94 carlyjane94 18-21, F 2 Responses Oct 30, 2013

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    Living With Trigeminal Neuralgia In NYC(Please Read)

    I am a 39 year old married woman who had been diagnosed with Trigeminal Neuralgia in 2003 at 29 years old. However, I believe I had TN 10 years prior to that and didnt know it. I had sharp pains that originated from my teeth,I had sharp needle pricking pain, over the years it...
    Ladybugg15 Ladybugg15 36-40, F 2 Responses Jan 31, 2013

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    Another Day Down

    Well.... my husband and daughter rode to get a pizza....that I can smell, but wont be able to chew..... its almost bedtime though. which means.... another day down. another day that this monster, TN, didnt beat me. Its hard to feel victorious about that when the pain keeps...
    trugritt02 trugritt02 26-30 3 Responses Jul 10, 2011

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    My Story

    I'm 22 yrs old I first started noticing pain my freshman year of high school on both sides of my face one day it was so bad it lasted the whole day it was on and off for years and now it came back I did an MRI and nothing showed up I wanna know the cause of this pain and its been...
    babiixoash babiixoash 22-25, F 1 Response May 16, 2013

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    Is It Ever Going To End?

    Hi guy's, I'm 27 and have had this for 4 1/2 year's. The problem I'm having is that I'm being told repeatedly that I'm too young to have this... Have any of you experienced this? Anyway I have all of the symptoms severe electric shocks, burning watering eye, noise irritation,cold...
    emz1985 emz1985 26-30 1 Response Nov 27, 2012

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    "a Pain That Can Take Away Your Smile!"

    Went to the Dentist in 1990 and had a root canal.  Horrible throbbing pain after few hours.  Returned to Dentist by way of husband at 12:00 midnight.  Said nothing looked wrong.  Kept calling my Dentist several weeks until the pain finally went away. ...
    LydiaMarie LydiaMarie 61-65, F 9 Responses Feb 19, 2010

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    What An Evil Pain

    I have suffered Trigeminal Neauralgia for 3 years,but not anymore.It is the worst pain known to mankind and is often referred to as the suicide disease,because people experiencing the pain feel they would be better off dead.Mine started after a visit to the dentist,i swear...
    colleena88 colleena88 46-50, F 5 Responses Jun 20, 2011

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    Worst Pain Ever...

    3 months ago I experienced the worst pain in my life. Pain in the left side of my face only...teeth, cheek, jaw, ear. It was relentless. I ended up in the ER begging for anything to kill the pain. I had not been to an ER in about 25 years. I had 2 shots of delodin which...
    longtobepainfree longtobepainfree 36-40, F 2 Responses Nov 17, 2012

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    Hope

    I was 22 when I was told I had TN. I suffered pain that made me come close to ending my life at times. I couldn't work. My marrige broke down. I felt I had nothing. For 13 years I existed, but didn't live. Then it just stopped. Well, not stopped, but hit a level low enough to be...
    casta1977 casta1977 31-35, F 1 Response Feb 22, 2013

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    Petition Re Dea And Us.

    Please sign chronic pain patients need the gov;t out of our relationship with our doctors. https://petitions.whitehouse.gov/petition/protect-those-chronic-intractable-pain-dea-and-its-war-drugs/rqbB2zMq?utm_source=wh.gov&utm_medium=shorturl
    leejcaroll leejcaroll 56-60 Jan 16, 2013

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    My Poem To Trigeminal Neuralgia

    http://www.youtube.com/watch?v=m13iJC3RVI8
    leejcaroll leejcaroll 56-60 2 Responses Sep 12, 2013

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    My Life Is Over

    Started in march with a tooth that had been cracked over 10 yrs went into shocking pain over night I went to the dentist who put me on a zpack a week after he told me to get a root canal.which I did.the pain never stopped after ending up.in the e.r. With a swollen face and more...
    jstagrl jstagrl 26-30, F 2 Responses Oct 27, 2012

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    Trigeminal Neuralgia Often Has Me Oppressed And Tired

    In February of this year I started having very bad pain in my mouth. Over these last 10 months I now have it in my eye, nose, ear, jaw and mouth. I think what BOTHERS me the most is people who don't have it, think you can handle this easily. I would never ever wish this pain on...
    mvplove mvplove 51-55, F 14 Responses Nov 27, 2010

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    I am so tired of the pain.

    Even in a medicated haze the pain finds me. I am useless. I can't concentrate,unable to even watch tv or read a book. Eating..that's a joke..major trigger. The only escape I have is induced sleep. It's a vicious circle and I'm so lost...
    stormy235 stormy235 46-50, F 2 Responses Jul 29

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    My Story Is In My Book, Had It For Decades So Too Long For Here.

    http://www2.xlibris.com/bookstore/bookdisplay.aspx?bookid=18435Miine started in 1979, out of the blue like most folks.  Mine is in the upper left side of my face so I was luckier in that it did not effect my eating, brushing teeth, speech, etc.It turned out that I have a very...
    leejcaroll leejcaroll 56-60 2 Responses May 11, 2011

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    One More Day

    I was diagnosed in in 2008 but i've suffered since 2005. Then in 2011 I started feeling pain pn the left side as well. On 4/2 I had mvd for my right side. I'm currently recovering hoping it worked....I still take meds for my left side I take gabapentin, carbamazepine...
    birnenbaum1 birnenbaum1 31-35, F May 6, 2013

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    I Have Atypical Trigemenal Neuralgia

    I am a 40 year old wife and mother of 2 and I was diagnosed with trigemenal neuralgia 6 months ago and it has completely changed my life. My doctors think that it is caused by my other health condition which I have had for years, Mixed Connective Tissue Disease (similar to lupus...
    Tammyadamsrn Tammyadamsrn 41-45, F Sep 25, 2013

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    Related Experiences

    Does no dr know how to treat this? Or can't it be treated? I had a block and had no relief. Zero. Now I'm having an epidural steroid injection to hopefully stomp out other pain but...
    Genesis922 Genesis922 41-45, F Aug 9

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    It's exactly 2 am here. I have school, doctor and have afternoon classes today. This week I have two important tests which I must not fail. Tomorrow and after tomorrow I'll have...
    brzdreamer brzdreamer 16-17, F Jul 21

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    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 Jul 21

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    I had a brother, who was my father, who was my uncle. He was murdered. Slaughtered even, his corpse looted & desecrated to this day. I'm sure you've heard of him. How can the...
    zinnyy zinnyy 22-25, M Jul 21