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. 186 People

    I'm new to all this but would really like some

    advice I've just been diagnosed with TN after 3 weeks of pain and numerous trips to dentists and doctors , I'm taking tramadol for pain relief that does nothing for the pain and yesterday started takin carbamazepine ... Is TN really as bad as everyone is making out ,does it ever...
    sarah30glynn sarah30glynn
    31-35, F
    2 Responses Nov 18, 2014

    Hey guys. I'm currently trying to raise

    awareness about TN and I was wondering if I could use any of your stories for my blog? I too have TN. I'd like to use more than just my experience.
    babym12 babym12
    18-21, F
    Oct 14, 2015

    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
    1 Response Jun 22, 2013

    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
    22-25, F
    2 Responses Oct 30, 2013

    I've been dealing with it

    for nearly 5 years now (it started during my junior year of high school). I used to deal with it well enough. Even my doctor said I was being strong because when I was having an attack I wouldn't start to panic; I would just cover the side of my face that hurt and wait for the...
    unsilenced unsilenced
    22-25, M
    2 Responses Apr 7, 2015

    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

    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

    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

    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

    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

    One sunny November morning I awoke to a strange

    pain in 3 far spaced teeth in my lower left jaw, it was a nagging pain that almost felt more like a pressure so deep it bored through my mind into pain. By the end of the day my whole lower jaw hurt, by the next day my left cheekbone joined the party. It was severe, but after 6...
    itwouldntbemakebelieve itwouldntbemakebelieve
    22-25
    2 Responses Jun 26, 2015

    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

    My Poem To Trigeminal Neuralgia

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

    I've had chronic migraines

    since I was 15 and my neurologist diagnosed me with them at 16 and no medication helped so I did what I could and learned to deal with them by sleeping or sitting in the dark, nothing worked but then about a week ago on my way to work I got a horrible electric like shock on the...
    saragmcginnis27 saragmcginnis27
    22-25, F
    Jun 18, 2015

    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

    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
    Feb 22, 2013

    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

    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

    I wish more people would write on here

    so that I could talk to someone who understands what it's like to deal with this pain everyday 😔
    saragmcginnis27 saragmcginnis27
    22-25, F
    1 Response Jun 21, 2015

    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

    There are no words to describe what I'v been

    through over the past 8 years. It started after a dentist filled my tooth. I kept thinking that I could wait it out...that it would go away if i could just survive one more day. I'm sad to say that this torture has won and I'm just going to wait a few more days to end it. My...
    kellyjo1012 kellyjo1012
    51-55, F
    1 Response Oct 31, 2014

    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

    I am 19 years old. I have been suffering from TN

    for about a year now. I am starting to find myself sinking into a very depressed hole. I kinda feel alone since no one understands. I have a real passion for having a family and I'm terrified that this pain will never subside and my chance of having my own babies is growing...
    babym12 babym12
    18-21, F
    2 Responses Oct 14, 2015

    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

    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
    2 Responses Aug 14, 2013

    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
    66-70, F
    3 Responses Sep 17, 2013

    It's 4:23 am and I just woke up with severe

    stabbing like pain in my face, so I took more pain meds and they aren't helping , I'm so tired of crying ;'( how can I make it any better at all? Anyone know? This is the worst pain of my life and I don't know how to deal with it I feel so alone and no one understands or can...
    saragmcginnis27 saragmcginnis27
    22-25, F
    1 Response Jun 20, 2015

    Hello , I'm new to this site

    but wanted to share my experience. I have trigemial neuralgia TN Drs think from my ms . I woke up with a sting in my tooth thinking better get to the dentist soon but ignored it & 3 days later laying on the ground screaming !! I had radiation at rush hospital in Chicago & after...
    ANGELTODO ANGELTODO
    51-55, F
    3 Responses Jul 11, 2015

    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

    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

    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, 2014

    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
    51-55, F
    5 Responses Jul 29, 2014

    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, 2014

    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, 2014

    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

    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

    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
    36-40, F
    5 Responses Jan 13, 2014

    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
    22-25, F
    2 Responses May 19, 2013
    deleted deleted
    26-30
    Aug 31, 2015

    I was diagnosed with trigeminal neuralgia 3

    years ago, but it was in remission until a couple weeks ago. I finally had to go with meds because of the severity of the pain. So I just started a New med (trileptal) this has been both good and bad. I am pain free but sleepy and drowsey throughout the day. I was told that...
    perfectlyimperfect83 perfectlyimperfect83
    31-35, F
    1 Response Aug 22, 2015

    "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

    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

    I have had TN symptoms

    for about 6 years. Started off slow, thought it was dental. Cold air, touch my face wrong, etc. and my face would explode. Then for weeks, nothing. Finally about 3 years later when I had a root canal on the right side of my face the pain worsened. I went to the doctor after...
    olive405 olive405
    46-50, F
    Mar 12

    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

    Please visit my blog.

    It's on TN. I'm looking for TN victims who are willing to share their experiences with TN. You can be kept anonymous. Www.startingyoungwithtn.wordpress.com
    babym12 babym12
    18-21, F
    Oct 15, 2015

    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, 2014

    I have been diagnosed with TN just over 6

    months ago, I have been for a MRI and now my symptoms have started in my throat and deep inside my ear, I have been told by the neurologist I could also have Glossopharyngeal Neuralgia also. This is devastating news for me as I am only 27, I would love to know of peoples...
    Fruitbowl Fruitbowl
    31-35, F
    3 Responses Sep 19, 2014

    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
    41-45, F
    7 Responses Oct 26, 2011

    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

    This is a video I made about my TN experience:

    http://ireport.cnn.com/docs/DOC-1032817 (and also https://www.youtube.com/watch?v=R12rJd7BlvU re;ated to my medical misadventure(s) as it were related to MVD for tn) Trigeminal neuralgia awareness day is October 7. CNNIreport did an online story last year fro the first annual TN...
    leejcaroll leejcaroll
    56-60
    May 23, 2015
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