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Trigeminal Neuralgia

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  • I was diagnosed with tn

    I’ve been on tegeratol, amertriptiline , gabapentin and have just started baclafen, pain in top gums ( all teeth removed  on left side) I’ve had lots off sinus issues also , have been told my left sinus is lying low? Has anyone one else suffered this unbelievable pain 

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  • What causes ATN to stay active?

    I am a single mother of 3 kids that is absolutely mentally and physically exhausted from the excruciating pain of Trigeminal Neuralgia. I was misdiagnosed with TMJ for 5 years now. I have been cleared from the ENT, top TMJ specialist in Houston, and have been hospitalized twice and both times cleared....

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  • Booked in for the Glycerol Injection and need positive stories

    Hi  I’ve suffered from TN for 13 years. I’ve barely been pain free for the last 2 years and been on 3600mcg of gabapentine for over a year. I was using pregabalin before which does work well but I just couldn’t take the withdrawal anymore and the weight gain and drowsiness and other side effects...

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  • Tegretol – Trigeminal Neuralgia – Remission

    Dear all, Just felt the need to write and say, I am finally off Tegretol for the past 7 days and so far so good. I think and hope I’m in remission, never thought I would ever be able to say that!! :o)) it’s been a very long and tough year!  My story - As much as I hated the drug, it defo worked...

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  • Need some help

    I habe been suffering from TN since 2 -17 of this year. Mine is the upper part of the nerve that any touch to my forhead or hair even causes horrible pain. I am currently on Carbamazepine 400mg 2 xs a day and it is not helping. I am expericing migraines on top like 3 times a week. My question is do any...

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  • Case- TN. Diagnosed 8 months ago.

    Diagnosed with TN in MRI, female of 22 from India, I have been given several combinations of medications but my body has become resistant of med. About other options, doctors told me it will do more harm than good( side effects). About acu puncture, is it helpful?

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  • 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...

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  • Dramatic reduction of Pain and attacks

    I've had Tn for about 2 years with only one remission that lasted 3 months.  I have been at every level of pain from bouts of stinging/burning like a 1 or 2 then weeks of stabbing, lightening bolts of pain.  Totally a ten.  No eating,talking,smiling, drinking,brushing hair or teeth,...

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  • Gum swelling and pain

    Does anyone experience gum pain followed by swelling with TM. Doctors and dentists dont seem to be familiar with the swelling as a symptom. I wear dentures and swelling leads to painful sores

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  • Possible Neuralgia?

    The pain started on Tuesday this week, at first I could have sworn my sinuses were playing up. I had pain along my left side of my face: forehead, temple, cheek bone, upper and lower teeth (maybe gum pain?) and jaw.  On Wednesday, the pain moved to the right side of my face. Same areas of pain....

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  • Stem Cell therapy

    Has anyone tried or knows anyone who has tried Stem Cell therapy? I have read from some places on Internet that they are using it now on Trigeminal neuralgia also. Any thoughts on that? 

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  • Hi Vicki, Re. Oxybuton and tyzandine.

    Do those meds. Help keep the pain away for days. Also if and when you get in bad pain what do you do to stop the pain.or does anything help. When I’m in bad pain I will take an antihistamine and and aspirin.Then in about 45min I’ll get relief. This TN is so debilitating and painful ,l feel so sorry for...

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  • Just diagnosed - struggling to find support and information

    I was just diagnosed with trigeminal neuralgia. My only support system is my husband. I reached out to the Kansas City contact for the Facial Pain Association but their group only meets every other month, next meeting is in January. The contact did recommend one of their books. And, sure enough, it is...

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  • Seasonal changes & TN

    Hi all.  I've just come from a spcialist appointment and have been officially diagnosed with TN after a 3 week roller coaster of PAIN, doctors appts, and medication. My GP & dentist both suspected as much.  I have been hoping that just maybe it might be something else, like a tooth...

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  • TN Remission????

    Hi there.  2 weeks ago I had what my doctor & dentist believe was an episode of TN.  I was put on Lyrica, only 2 x 50mg per day, I did up it to 75mg x 2 because I had some pain still.  For the last few days I have been feeling really good with no pain to speak of.  I'm just...

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  • Trigeminal Neuralgia

    I had TN for around 6 years ...... The pain is so bad , i dont know what to do anymore ....... i never sleep for more than an hour at night.......This pain wakes me up 6/7 times a night, i get it about 5 times a year and it lasts for about 5 weeks each time....... The pain is so bad in the night i just...

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  • How does one decide whether to take off work while experiencing TN?

    I have had 4 episodes of shingles in the past 10 years, 3 of which were in my eyes. I've also had increased episodes of trigeminal neuralgia over the past 5 years. I have tried several medications - becoming allergic to one, and switching to another which controlled the TN but left me unable to concentrate...

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  • TN suspected, so confused!!!

    Im not sure where to start.  I started to feel pain in the left side of my head exactly one week ago.  It wasn't shocking or stabbing, just achy jaw temple area.  The same the next day with a bit more pain coming and going.  On the 3rd day I went to the ER as I was experiencing...

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  • TGN and work

    Ive had tgn for two years, and it’s gradually got worse although thankfully not to the child birth levels of pain some of you have described. Im awaiting mri results, have had teeth out, have seen a neurologist and consequently I’m taking 600mg of carbomazepine twice a day and feel like I’ve been lobotomised...

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  • TN pain gone - for good hopefully.

    For some people, the TN pain comes and goes. Have anyone kept track of what causes it to go away ? I've had TN toothache for more than 2 years. It's pain 24/7. There are times that it comes every 5 minutes thru out the day. Like you're getting your teeth drilled every 5 minutes, spreads...

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  • ATYPICAL ODONTALGIA

    Hi. About three months ago I started to get tooth ache after visiting my dentist I eventually ended up having 2 root canels and an extraction even though he was reluctant as my teeth looked healthy he couldn't understand why I was in pain and thought it must be due to my fillings being old so decide...

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  • Research for M.S. ( Relevance to T.N??)

    Has anyone heard anything about the new research into stem cells for M.S. As I understand it bone marrow is taken from the patient. They are then given chemotherapy to reduce the immune system which gives nerves a chance to regenerate. The bone marrow is then replaced. I may have some of these facts...

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  • TN symptoms with jolts in head!!

    Hi all I have recently been advised by my GP that I have textbook symptoms of TN. I get regular episodes of the burning sensation to the left side of my face, however, I get the electric shocks in my head. These last no more than a few seconds, but reading many stories and articles on the internet, the...

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  • hello im looking for some support

    Hi...today is my birthday I'm 61 and two days ago was diagnosed with trigeminal neuralgia what a lovely present! I have been put on tegretol and been advised to increase my amitryiptiline at night....im hoping that this helps if live to hear your experiences.of this cruel illness

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  • TN

    just a tip i used to do when the pain started is open my mouth spoke to the surgeon last week about it and he agreed it should work as you open your mouth it slightly pulls the nerve away from the artery  hope this helps people

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  • 72 hour 50mcg Fentanyl Pain Patches

    Self diagnosed myself with TN in 1998 after 7 neurologists failed to find. Found by typing in a few search words & TN kept coming up. How can 7 neurologists miss this? Things got worse and in Jan 2002 had MVD surgery by Dr Tew in Cincinnati,OH.  My pain is all in the V3 - Mandibular Branch of...

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  • Pain during MRI

    Hi, I had an MRI with contrast yesterday (Saturday), during which I experienced a lot of pain in my teeth and left cheek and temples. Just curious to know if anyone else had the same experience. It was a good hour before the stabs and shocks went away. The scan operator was a bit concerned about it...

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  • Can anyone advise me please?

    Hi, I have been in excruciating pain for almost two years now and was diagnosed late 2017 with trigemenial neuralgia, this is affecting every aspect of my life to the extent that it is almost dibilitating me, I have seen a consultant several times now but keep seeing different ones who give me conflicting...

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  • Has anybody been diagnosed with SUNA

    i was diagnosed and treated for TN for several years. I  was then seen by a different consultant and rediagnosed with a condition called SUNA.  Almost the same s TN but rarer.    Has anybody been diagnosed with it or have any information about it.

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