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Trigeminal Neuralgia

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  • shelly36216 1

    Feeling better

    Just an update for me, and possible hope for others.  I got hit with TN the first couple days of June with the longest bout of pain lasting an unbearable 20 hours. Carbamazepine 1/2 dose wasn't cutting it until I was able to reach the full dose.  The full dose, along with 600mg of Ibuprophen got me under...

    0 replies 0 votes Reply to shelly36216

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  • GemLove 2

    Losing hope...

    Hi... I normally don't join forums... chat groups.... or even Facebook groups... but I'm really struggling today. I've cried a lot. And I don't know why... My TN has flared up a lot. I've had an attack a week so far, form February... mostly ones I can medicate for but two put me in hospital having to...

    2 replies 0 votes Last reply
  • IsurvivedTN 2

    How I survived, researched, and overcame Trigeminal Neuralgia

    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 the weeks went on, the...

    173 replies 18 votes Last reply
  • shelly36216 1

    Feeling better

    Just an update for me, and possible hope for others.  I got hit with TN the first couple days of June with the longest bout of pain lasting an unbearable 20 hours. Carbamazepine 1/2 dose wasn't cutting it until I was able to reach the full dose.  The full dose, along with 600mg of Ibuprophen got me under...

    0 replies 0 votes Posted
  • colin04561 3

    9 months pain free

    Today marks 9 months pain free. I had my MVD on the 15th of June 2016 and this is the longest I have gone in 5 years pain free. I felt like sharing with everyone because it is a wonderful thing to look forward to for those of you contemplating MVD.

    47 replies 2 votes Last reply
  • tawsy1 1


    hi, can this cause swelling of the fact ? Near and or above eye

    1 reply 0 votes Last reply
  • christina1956 1


    Has anyone out there had double vision after their surgery? It totally disorientated me.I had motion sickness and the lights hurt my eyes. I left hospital on the 9th day after surgery which included 2 visits to the Opthamologist whilst still in there.They said all they could do was put a patch on one...

    34 replies 1 vote Last reply
  • fed-up 3

    Dental Work & TN

    my TN was caused by dental work. i need to have a filling and a tooth taken out and would like to hear of anyones experiences. i was supposed to have the filling done today but i just couldn't go through with it.

    1 reply 0 votes Last reply
  • jennie66572 1

    TN or tmjd or what????

    I have never joined a forum so excuse my poor etiquette. I am in severe face pain and I don't know what to do. Ear pain jaw pain eye pain headaches stabbing pain in cheek that comes and goes, but it also happens in the jaw and ear also. I just want to know what is what so I can start feeling better....

    2 replies 0 votes Last reply
  • laura19209 2

    trigeminal neuralgia, seriously cant cope anymore, tips please

    So I'm 24 and since Friday have been in agony, sunday the doctor said it was trigeminal neuralgia, after reading info on it, as I had never heard of it, its left me pretty depressed, I can't face doing any house hold chores, I've literally just lay on sofa, with my scarf wrapped round my head, feel like...

    156 replies 1 vote Last reply
  • chris05340 2

    Facial numbness

    Hey folks Can somebody who's been diagnosed with TN describe for me if they get facial numbness? I currently intermittently get numbness of my cheeks. Just below the eyes. Varying degrees of how bad it is. Dr and dentist both thing it could be TN as I was getting random electric shocks in the left side...

    5 replies 0 votes Last reply
  • Spiderkeys 2

    Do I have Trigeminal Neuralgia?

    I'm male and 43 years old. Over a month ago, I was using a powerdrill, had it in the wrong direction and it kicked back on me and the heavy whacked me extremely hard on the right side of my face, after in and out of my GP, and xrays showed no signs of a fracture,  a doctor diagnosed me as a crushed...

    16 replies 0 votes Last reply
  • lawrencia10255 2
  • jocelynrenee 2

    TN and MS - typical and atypical pain

    I am 31 years old and was diagnosed with TN when I was 29. At the time, my neurologist tested me for many things, with a primay focus on Lyme Disease as I was living in the American Northeast. He didn't bring up MS, which was a huge oversight. I started with a new GP after moving to the American Northwest,...

    3 replies 0 votes Last reply
  • erin84393 2

    Gamma knife noninvasive surgery- Worth it?

    Hey guys! I have officially been moved from neurontin to Tegretol this week and so far, it's made me very sick- I have zero appetite, and I'm nauseated all the time. Even on the baby dose I'm on (I'm supposed to be increasing it over the next three weeks). My neurologist basically said this was my last...

    3 replies 1 vote Last reply
  • janine34099 2

    Do I have Atypical Trigeminal Neuralgia ?

    I have been suffering with facial pain since October 2011.  It seemed like toothache but moved from one tooth to another.  I went through all the general protocol of dentist, orthodontist, and GP.  My pain was intermittent and excruciating so I totally feel for what you describe.  My pain is totally...

    22 replies 2 votes Last reply
  • ellie1857 2

    Do I really have TN?

    I was diagnosed with TN last November after weeks of extreme jaw pain.  I countinually compared it to abscessed tooth pain but I could not locate pain to one tooth.  I have been on several drugs.  Lyrica is my current medication.  Only 75mg a day.  I have recently had aching jaw pain.  I assumed the...

    3 replies 0 votes Last reply
  • lizaakalisa 2

    Trigeminal neurosis? ??

    I'm just going to jump right in! This is the 1st time I've done anything like this. I started out having some tingling around my lips just on right side. Along with this I had a horrible headache, chills, joint pain.I finally saw my doctor a week later because it was getting worse and slowly moving...

    5 replies 0 votes Last reply
  • luisa17851 1

    Numbing the nerve...

    hello,  i have MS and have been experiencing TN for a few years, my GP has tried several different medications, but none are stopping the pain completely, they do control it, so I can eat, talk, brush my teeth etc. Yesterday I went to the maxilla facial clinic and had an injection in my mouth to numb...

    1 reply 0 votes Last reply
  • misie 1

    Trigeminal Neuralgia

    I have had excruciating day today, 7 attacks of trigeminal neuralgia, the longest one lasting for 30 minutes. I am taking oxcarbazepine, 900 mg so far. Supposed to work up to 1200 mg. I am having trouble with nausea , is this a side affect that anyone else has experienced? The only other problem is a...

    8 replies 0 votes Last reply
  • erin84393 2

    Reducing Triggers at Work

    Hey everyone! I've had my TN for over a year (diagnosed at 22) now which started in my jaw/teeth on the left side of my face. I started a very high stress job in January, and now I am experiencing intense migraines at work behind my eyes. I knew it was a matter of time before the disease progressed,...

    6 replies 0 votes Last reply
  • RachRoux 3

    Just been diagnosed

    Hi everyone I was diagnosed with Trigeminal Neuralgia this week after pain suddenly started in march after dental work. My neurologist is sending me for scans to try and see if there is any underlying cause and I have been started on Lyrica 100mg a day which I am not really happy about as I've been on...

    12 replies 1 vote Last reply
  • SatoriSecrets 1

    Do I have Trigeminal Neuralgia? What's causing my headaches???

    Hey guys, I think I might have trigeminal neuralgia. I would appreciate some feedback. Here's the short run down: -December 2016, got into snowboarding accident.  -Next day had a concussion, slowly started to heal after a few weeks. -January 2017, concussion "came back." -Got an MRI. Brain MRI was normal. ...

    3 replies 1 vote Last reply
  • shelly36216 1

    Topical Relief?

    I've been having some relief w/a hot compress but not sure if that made me worse the next day.  Any advise on hot/cold compresses? I'm on day 4 and just coming off of a 12 hr episode. Worst day of my life I think

    3 replies 1 vote Last reply
  • angelabugbrooke 1

    Trigeminal Neuralgia

    Having been diagnosed over 2 years ago I have been taking Tegretol (Carbamazapine) regularly.  Condition has not improved, but I got loads of information from the TN Association conference last week.  Anyone diagnosed or experiencing similar TN pain should contact the TNA.

    5 replies 1 vote Last reply
  • joanne49021 2

    Gabapentin side effects

    I've been on gabapentin since sept. Last year. Been in 900mg daily. This past week I have slowly increased dose to 1200mg because of pain. Got up to 1200mg on Wednesday and to day is Saturday. The last few days my legs and knees started aching. Yesterday my back and hands ached! Today just closing my...

    4 replies 0 votes Last reply
  • vicky59618 3

    Diagnosed with atypical trigeminal neuralgia

    Finally seen neurology and confirmed diagnosis of atypical trigeminal neuralgia waiting mri neurology changed my carbamazapine to slow release tegretol I'm on 400mg am and night and 200mg in afternoon I'm still struggling with breakthrough pain which consists of migraine type pain above left eyebrow...

    28 replies 1 vote Last reply
  • michele82354 2

    Recently Diagnosed trigeminal neuralgia, advise/tips! Help Please

    I am 26 years old and was just diagnosed with Trigeminal Neuralgia. I have never followed or participated in a blog before so I am hoping I am doing this correctly. I just really need help, tips or anything at this time would be very helpful and much appreciated. I was diagnosed with Trigeminal Neuralgia...

    25 replies 6 votes Last reply
  • jason15970 3

    Just diagnosed with trigeminal neuralgia

    Hi, new to this! I was diagnosed with this yesterday after suffering around 2 weeks with facial pain on the right hand side, behind my cheekbone and down my jaw, a constant 'dull' throbbing with occasional 'flashes' of more acute pain. It started just after dental work but the dentist looked at me twice...

    37 replies 0 votes Last reply
  • albrock31 1

    Type 2 Trigeminal Neuralgia

    I have the more constant pain with if I'm lucky a few days with no pain and then a flare with sever constant pain that lasts for days. I'm taking Tegretol and I'm up to 400mg twice a day and on top of that Hydrocodone and Oxycodone for when I have severe pain. Today my Dr. he'll refer me to the pain...

    54 replies 1 vote Last reply
  • nicola2007 1

    New to group

    Hi, my name is Nicky, 45 years old and a TN sufferer. My first really bad attack was 12 years ago out the blue. Constant pain for about 2 weeks and then nothing........till recently! Last 4 months I've had 5 attacks of electric shocks through right side of mouth then burning and red all the side of my...

    6 replies 1 vote Last reply
  • chantell28219 2

    Sinus and roof of mouth pain!!!

    Hi I wanted to find out if having sinus issues is commen with tn? I have a runny and congested nose that throbs and burns and stings..I also suffer the same sensations in the roof of my mouth...this is on top of right sided face and teeth pain...I suppose I'm not sure it's tn was looking in to vasculitis....

    6 replies 0 votes Last reply
  • amanda60033 2

    Atypical tn, weird pain relief

    I've had atypical tn for over 6 years and I've looked over so many of these boards over the years, but don't remember ever seeing anything about getting temporary relief from things like mints, halls, or even eating. While the movement in my face can make my pain work, I've always had a favorable reaction,...

    12 replies 0 votes Last reply
  • karen36710 3

    Atypical TN...anyone else with this

    I was diagnosed with TN 12 weeks ago.  Woke up in the AM with a sore face that night the electric shock like pains started and came back when I woke up in the next morning.  Family doctor put me on carbamazepine low took the pain away immediately, then he doubled then quadrupled the dose all...

    7 replies 0 votes Last reply
  • valerie17599 2

    TN2 trigeminal neuralgia 2

    As i have learned there are 2 types, i have TN2, constant nagging pain, i have pain on the left side of nose and inside nostril and jaw, cheek and gums where they took my molar out and then did a bone graft. Very depressed. I am taking gabbapentin, and tramadol.

    9 replies 0 votes Last reply
  • sally02986 2

    New to forum

    hi  I'm so pleased I've found this forum and I've actually learnt my condition may have a name!! AO!! I'm at my wits end with pain! I've had 3 root canals, and a crown all on my right side and the pain is exactly the same as before treatment! My dentist has all but dismissed me as a nuisance as ' your...

    48 replies 0 votes Last reply
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