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Trigeminal Neuralgia

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  • Second Microvascular Decompression

    Hi, I've had my TN for 10+ years now.  I'm interested to hear the experiences of anyone that's had a second Microvascular Decompression op.  I had my first a couple of years ago but it hasn't been successful.  I'm trying to manage the pain and hold down my full time...

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  • No official Diagnosis-Is this really TN??? PLEASE HELP

    I apologize in advance for the long story...this has been a nightmare. In May of this year, I had 6 fillings done on one side of my mouth. I work for a dentist as a medical insurance coordinator and up until starting this job in August, I've never been able to afford to go to the dentist in my adult...

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  • MVD

    It really does get better. I was very depressed and discouraged. It has been a year now. At 4 months the double vision disappeared. I have numbness on my left side that is hard to get used to. My mouth is always very dry and eating is not enjoyable. I realize that I am lucky and it could be so much...

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  • MVD Surgery Scheduled

    I have been suffering from TN for 5 years. The medicine is just about useless at this point so I finally met with a neurosurgeon and he's agreed to do the MVD surgery. He wasn't thrilled about operating on a 24 year old but I haven't eaten in almost 4 days so it's pretty bad. I'm...

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  • Occipital Neuralgia...

    Has anyone ever had Occipital Neuralgia as a result of the MVD surgery for TN? I had my surgery on 1/23/17 and now have been diagnosed as having Occipital Neuralgia which causes pain and burning at the back of my head. Ugh the TN pain was gone immediately after the surgery but now I'm dealing with...

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  • Flying

    Can anyone tell me if flying makes this problem worse ie. does it bring on an attack. I am concerned as I would like to take my son on holiday, we have not had a holiday for 7 years. Thankyou.

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  • 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,...

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  • DOUBLE VISION AFTER MVD SURGERY FOR TN

    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...

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  • Carbamazapine/Tegretol Withdrawl?

    Hi I am weaning off carbamazapine after i had a few seizures. It interacts with another med im on so aparently thats why it's happened. I was on 400mg and my dr told me to go to 200mg for a week then half again etc. I'm feeling so ill. Its like the energy has just been sucked out of me to the...

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  • Urgent help needed!!!!!

    I have been struggling with what seems to be trigeminial neuralgia according to my gp. Although this is the case, I have no aching feeling in my jaw, teeth etc. Instead I get a horrible burning, itching sensation on my face. This causes redness and irritation. I have been on tegretol (100mg) carbamazepine....

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  • Atypical odontalgia

    Hi there, I had two front teeth veneers done back in Jan 2017.  I have Sjogrens Syndrome which means I produce very little saliva - over many years this has caused my front teeth to erode and chip easily.  The dentist recommended I had veneers done. How I regret this now.  Since then I...

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  • Trigeminal Neuralgia

    I got diagnosed with this 5 years ago and the pain keeps coming back. Sometimes I feel like I can't take it anymore. Anyone else understand how I feel? I have 2 kids to take care of, a job, and I'm a full time student. This horrible pain makes that very difficult sometimes. I'm on a ton of...

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  • SCARED AND SOOOO CONFUSED

    iv been doing research on TN ( o haven't been diagnosed waiting on appointment with neurologist) but someone mentioned something about m symptom about my ear!!! Sooo last night I was doing research on TN and like always it made sense but my problems with my ear don't!!! Long story short......DO...

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  • 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...

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  • Had anyone had gamma knife?

    Hi group members - I was diagnosed with TN in 2006 and had MVD surgery in 2009.  The surgery was unsuccessful.  I was wondering about gamma knife?Has ayone had this procedure/surgery?  I am seeing my family physician in a couple of weeks and would like to discuss this with her.  I...

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  • 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...

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  • Has anyone with tn have full force pain mainly from behind ear?

    Has been 5 months. Non-stop aching and burning,shooting sharp pains behind ear, inside ear os numb, starting to lose hearing, balance is off, constantly biting my lower lip when eating or talking!! Haven't had full force pain as frequently in last month!! Nothing even starts yo ease pain!!! Teeth,...

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  • 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...

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  • There is a support group for people with TN

    They publish quarterly journals and have a special working group for younger people with TN Here is the most recent quarterly Journal: http://fpa-support.org/wp-content/uploads/2017/07/TNA-Quarterly-2017-Summer.pdf

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  • 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...

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  • Carbamazepine/Tegretol

    Hi All, I started taking Tegretol a few months back and have been increasing my dose gradually under my drs care. This med does have the usual side effects dizziness, tiredness etc which can be pretty intense but what I'm concerned about is as soon as I started taking this med I got a really sore...

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  • V1 Branch pain only

    I have been having intermittent shock/stabbing/burning pain in my forehead and eye area..sometimes a little bit of my nose. I went to a neurologist and he says it can't be TN because it is usually in other branches of the nerve and has triggers ( I have no triggers at this point). Does anyone else...

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  • My Battle With Trigeminal Neuralgia

    Hello everyone, I have been following a blog called My Battle With Trigeminal Neuralgia. I have got worried as the girl who is the owner of this blog haven't done any posts since March. Also I can't find anymore the FB page connected to this blog. Probably she just doesn't feel like making...

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  • Is Lamotrigine effective for TN?

    I have been on Carbamazepine since January this year for TN. Due to side effects, my neurologist is phasing me off Carbamazepine and starting me on Lamotrigine. I was just wondering if anyone else is on Lamotrigine and how effective it is on its own for TN, as I read conflicting reports. Also, are there...

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  • My wife recently diagnosed as trigeminal neuralgia

    I married my wife about 2.5 years ago. We have such a happy family and trying to have kids until a week ago, sae felt a horrible pain in her right side of face when we went to bed. Initially she thought it was a bad tooth so she flossed and used mouth wash. The pain seemed to go away every time she...

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  • Atypical Odontalgia

    Hi guys, For the past two months I've suffered with pain which seemed to stem from a crown I had previously had a crown and two root canals on. I also had a strange dull sensastion across my jaw and cheek, sometimes turning into tingling. After 5 dentists, and seemingly no explanation why I was...

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  • Root Canal from HELL!!!

    On February 24, 2016 I went to the dentist office for a root canal, I walked out of his office that day not knowing that he had changed my life as I knew it! During the most unorganized procedure I had ever seen, the dentist drilled a hole through my tooth, when he inserted the sealant it traveled through...

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  • Not all TN is the same

    Missy makes an excellent point.  I reviewed a great deal of literature when my daughter was diagnosed.  There are different catagories of TN based on several factors including but not limited to the manifestation and location of symptoms, the description of the pain, and the high resolution...

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  • 72 hour 50mcg Fentanyl Pain Patches

    Having suffered with TN since mid 90s & having 4 ops including MVD & 2 gamma knifes I would hope to be rid of these lightning bolts. On Apr 3 of this year I was in 7th emergency room in 7 days and since my pain is in the Mandibular Branch of nerve I was unable to talk, shave, brush teeth, eat...

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  • Post MVD problems

    Hi everyone. I had my MVD operation in February. It went well and has left me free of the trigeminal pain. However I now get a different sort of pain which seems odd but I wondered if anyone else had experienced it and to find out if it goes away eventually? In the morning when I wake up I have a really...

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  • TN or Dental?

    Back in December 2016, I started experiencing severe pain in my face, around the same area I had a tooth with a small hole in, since I knew I could not get to a dentist fast I used a temporary filling.  After a few days the pain worsened dramatically and I made an  emergency appointment, where...

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  • tegretol works on burning and stabbing but...

    Hi friends, i have had Tn for nearly 3 years and am on Tegretol (700)and Nortryptiline (30)which works well for me. It seems to cut out the burning and stabbing shooting walloping type pains Which I am thrilled with believe me. I do notice what I am left with lately is more milder twinges but a feeling...

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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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