Good Morning!
I’ve been recently diagnosed with Type 1 TN on the left side (May 2016), though I’ve been experiencing pins & needles on that side of my face for almost three years.
I’d like to ask everyone, were you sick during your first major attack or diagnosis? I had been diagnosed with Mononucleosis two weeks before I had ‘the big one’ and had many mild attacks leading up to it. The mono was brought on by stress (work trip to FL from WA, moving out of our house into friends house, building a new house (still not done with that…) getting married, all within a month!) I’m considerably less stressed now that the wedding is over, but I am on a maintenance dose of Tegretol 400mg a day. Just wondering when your first attacks occurred were you sick or stressed?
Sending good vibes!
KC
Epstein Barr Virus the cause of Mono is one of the most studied viruses of all. It is a common cause of TN like pain. Key here is “TN like pain” I would work at getting it sorted out. IF EBV is the cause of your pain or attacks that’s a horse of a different color in terms of long term treatment… A TN1 DX could lead one to surgery that most likely would fail if not make things worse if the EBV is the cause… “Pins and needles” is a different animal too with multiple causes that often are not TN related.
TJ
I’ve thought the same thing! But every time I mention that I had mono dx first and then I started getting TN symptoms the Dr’s just kinda brush it off. I’m not really sure what to do.
I had four episodes of Bell’s palsy before being diagnosed with TN about 4 years ago. Bell’s palsy is facial paralysis on one side of face due to inflammation of 7th cranial nerve, usually caused by infection with a virus of some type, possibly the herpes virus that causes cold sores. I’m currently dealing with my 5th episode of bells right now. I have TN2 based on my symptoms of constant burning, boring, gnawing kind of pain. It has always been my thought that the Bells Palsy and TN were somehow related in my case, although there is no concrete proof of that. Seems to me that if a virus can infect the 7th cranial nerve and cause problems, it could easily infect the trigeminal nerve and cause damage as well. Since mono is caused by a virus as well, that might be related to your TN too, if other causes have been ruled out. No scientific proof of this, of course, but it certainly makes you wonder if the two are not related. Rest and take care of yourself! Wishing you a pain free day! 
EBV conditions are actually a lymphoproliferative disorder. I would tend towards a good infectious disease guy for a referral. Its also worth visiting with a Rheumatologist or endricinologist , and I don’t wan’t to scare you possibly even a hematologist. (One of the first symptoms of lymphoblastic leukemia (another but unrelated lymphoproliferative disorder) is TN) In this day and age docs are so over specialized they can’t look out of their own tunnel. (especially the neuro guys) GOOD internists are non existent (they either became heart guys or rheumatologists) and Primary care guys all to often couldn’t get one of the good residency programs.
TJ
Thanks for your replies! You’ve helped me make the decision to get quite a few opinions before I jump in to anything. First stop, find a primary, get some blood work done!
I was coming down with a cold I thought right before I got type 2. I was working a lot of hours and was run down too. Similar to you, none of my specialists saw the connection either. Except my primary. Good luck.
So after you were able to heal, did your TN symptoms improve?
I actually had a six year remission where I was symptom free! It spontaneously resolved itself until March of this year. Still trying to cope. 
According to my latest consult, am not a surgical candidate again. I am praying for another remission. Soon. No cold symptoms this time but was working long hours. I am still convinced stress has something to do with my reaccurance.
HUGE YES 
! I was running a low grade fever and the whole rt side of my face and head went totally numb! It lasted for a solid 2 months, way after the fever had passed. Since I have MS I called my neuro and he just told me it would pass, but not what it probably was. I had no pain, just total numbness including my tongue, eye, ear, side of my neck to the top of my head. At least it didn’t hurt 
; better than unbearable, lazar-drilling pain like now 
.
Peace & Serenity, Maris
Mine did, but returned about a year later 
. From there it’s history. . .
Unfortunately my TN2 symptoms have never gone away. The pain level varies according to my stress levels but it’s always in the background waiting to flare up 
Yes, I found that when a very bad attack comes on I have been ill and very stressed both times. I’m lucky that I have had only two bad attacks since being diagnosed in a year, that lasted a couple months at a time and the illnesses I had leading up to it weren’t very severe either. The first one was after a bad sinus infection had cleared up, around the time of first lay offs in my old employment and the second after a gallbladder infection that I was hospitalised for 8 days for and ta second round of lay offs. I always thought that it was strange that when my immune would be at its weakest I would get a flare up. Low and behold now waiting on a rheumatologist appointment to have my immune further looked into. I fully believe mine is triggered by a weakened immune and stress and I’m afraid no one will ever convince me any different.
I have what the doctors called “Atypical Trigeminal Neuralgia” or ATN which is rare and the neurologists and neurosurgeons say they’re not sure how to treat it. The pain is constant, day and night and goes from a level 3-4 in the morning up to a 8-10 at night. Was given Tegretol for a year which I realize now made the pain worse. It also sapped all the sodium from my system and I ended up in the hospital with Hyponatremia. If you are taking Tegretol or Trileptal, please ask your doctor to give you monthly blood tests to monitor the sodium level. Mine just said “you have low sodium” and never brought it up again. He didn’t say it could kill me. Since I am bipolar II (no manic phases, just short or long periods of intermittent depression) I can’t take antidepressants to help with the pain because they change my personality drastically and most of them make me much more depressed. I chew gum constantly, which for me is a remedy. The doctors have not been able to help. Neurosurgeons all say that ATN is not helped like TN 1 is by the various surgeries like Gamma Knife and there’s also some kind of treatment where they push a wire of some kind into the back of your neck. As for searching for a cause - in my case there were 2 infected molars on that side of my face. Then I had to have oral surgery after they were pulled. Some doctors and dentists say that was the cause and some say “no”. I just know that it hurts as soon as I stop chewing gum, eating or brushing my teeth. Sleeping at night is tough because I can’t keep the gum in my mouth. Using oxycodone sparingly. In my case I can’t blame stress or a virus. It came out of nowhere and ruined my life for the past 2 years.
hi again!
Well, it certainly seems that the weaker I feel, the stronger my TN is. As many of you know, healing from mono can be a very long and tedious process. I was reminded (by my face) this week that I’m still not well and had pain through the roof. It’s become really difficult to chew and talk so I switched over to fruit/veggie smoothies and that’s what I’ve been living on for the last few days. I’ve also started to experience some pretty deep cramping on that side of my face. My neuro and primary both can’t see me until mid-august and my specialist is booked out until Sept. 1st. I guess they say patience is a virtue right?
Yes I was very stressed when my first bad attack happened. It doesn’t cause it but can certainly bring on an attack. Had symtoms for many years before but not bad enough to seek much help. I had two unnecessary root canals before diagnosis.
I had a cyst in my right lower jaw. They had to take my wisdom teeth then cut into my jaw to get the cyst. They wanted to do my left side immediately cause they felt a cyst could grow there. So 9months after my surgery I went in for the left side. My jaw was still healing and I couldn’t open my mouth far. Instead of knocking me out like was plan they yank my jar open. Then I ended up with a dry saliva duct that got Infected. I had what was described as TN2 pain ever since on both sides of my face. Then started to get TN1 pain just on my left side. But my first BIG pain attack happen 2 years later. My doctor took tested me on everything and found my estrogen level plummeted. I normally have very high estrogen. Ever since the BIG one the pain came more often and more sever. Now 2 years after the BIG one I have pain all day long that will range from a 3 to a 10. Since this spring when I was diagnosed with TN1 ,TN2 on both sides the cocktail of meds I am on has helped that I haven’t been to the hospital since April.
Hi mrsgarza,
I was not sick but in good health when my TN Started. I wishyou pain free days ahead!
Scott
I was stressed for continuous period of 4 to 6 months which triggered sharp shooting pain the surgeon said it is TN. I am convinced in my case it was the stress that’s brought it on. With high dose of tegretol I feel nauseated sometime.