Virus related?

neurologist said this could be virus related IF mri showed up negative?! anyone else been told that before or known of anyone else who has been told this?!

Maybe HSV? Have you had shingles? He might be aiming toward Post Herpetic TN.

ive never had shingles but i have had chx pox.. ( i was born before the vaccine)...i dont have gential herpies but i DO have herpies on my lips/nose/chin a LOT !! OMGOODNESS I will look into this .. thanks .. anyone else have any ideas please help me?

I answered your other post, but the answer is yes.

I talk to a lot of doctors while doing research to support patients. The prevailing opinion seems to be that SOME cases of TN might be related to the Herpes Simplex I virus which causes cold sores. But the mechanism for neuropathic damage hasn't been shown conclusively from this vector (source).

Regards, Red

thanks ... this is really interesting to me because my whole life I have struggled with lip sores (on mouth ..) .. i mean like REALLy bad... but this also offers me hope that this WILL be a "come and go" thing and as we enter day 7 tomorrow of the pain may be this will STOP for a least a few weeks until another episode. i just cant imagine living like this day in and day out all the time for the rest of my life!! i would just cut the nerve!! I FEEL LIKE I AM GOING CRAZY!!!!!!!!!!!! I just need SOME hope that THIS WILL STOP FOR A WHILE !! Just a break, you know?! JUST A BREAK! ARG!!!!!!!!!!!!!!!!!!!!!!!!!

ANOTEHR EPISODE IS HAPPENING AND I JUST WANNA SLAM MY HAND TRHOUGH THE DAMN SCREEN!!!!!!!!!!!!!!! They last about 2 hours with the bursts happening every 15-30 seconds .. I have a few hours break in between so i have a total of about 6 hours of chronic stabbing pain a day and i feel like IM LOOSING MY FLIPPING MIND!!!!!!!!!!!!!!!!!!

What meds are you on gerir, and in what doses? Do you need to go to an emergency room for assistance?


Born in 1953 I had chicken pox and when stressed and lip/chin herpies throughout my childhood. I later got Optic Neuritis in 1974. I then ended up getting Multiple Sclerosis. The MS was diagnosed only after I got Trigeminal Neuralgia in 2004. The doctors then concluded that I had MS for 30 years because my dad died from it.

There are studies being conducted to determine the viral cause of MS which are inconclusive as yet, but similarly, TN is caused by the damage to the myelin sheathing. It is my personal opinion that indeed all of those diseases are both viral-related and our own immune system response.

I hope this helps in some way.

I have post-herpteic TN, had it for 11 years. Stress activated it. Also, I had chicken pox at 39, so bad I turned yellow. Gabapentin totally got rid of my pain. Couldn't continue on it due to intestional problems. I'm on Lyrica now which helps. Check out those medications. I'm avoiding chocolate and nuts (which may cause the virus to be more active) and just started taking astragulus. All of that is supposed to help your immune system. If we can just make the virus "lay down" that would help. I'm eating really healthy, exercising, taking my vitamins, taking lyrica and astragulus, trying not to stess out. And praying for remission!!! Good luck on your search for relief. WE ARE ALL HERE FOR YOU!!!!

Is there a blood test that confirms the HPV or shingles. I aso get the canker sores and my GP had mentioned it once.

My doctor had asked me if I had any rashes when he was making the diagnosis... he said he was ruling out shingles, so I guess there is a connection somehow. I have never had canker sores or anything like that, and my MRI came out fine. My doctors have no idea why this is happening. Geri-- I completely relate to your post about wanting to slam your head, and needing a break and going crazy... I have become a different person... an angry, miserable, unpatient person who no longer likes to do anything I did before- or really anything at all. I am out of hope and don't know how to cope. I read about surgeons cutting the nerve-- but it can cause facial droop. I was told no because the doctor said I am too young and he doesn't want to do it, but I would gladly have facial droop the rest of my life (I am 25) than have this pain for one more minute...

Shingles though from what I have read is a painful rash. I have never had that but I will a couple bumps across the back of the base of my neck and canker sores which I have had for years when I got stressed. I will talk more with my GP. I assumed the stress was from the pain but it could be the other way around. My neuro sucks and is only wanting to get you out of his office fast. Too bad my HMO makes me go to him. Wondered if a blood test could test for the virus.

dr said blood tests do NOT test for the virus :( BUT I HAVE HAD A GREAT DAY TODAY!! I am on the anti-inflams and a mega dose of steroids. i feel GREAT TODAY! still waiting for mri .. UGH!! But either it is passing or i have hit the right combo of meds.. still staying away from the carbatrol as much as i can . my dose is high .. indomethcin 75 mg and the prednisone 60mg.

I have PHTN and NEVER had shingles on my body. It's in the nerves in my eyes and face. Would of much rather had it on my skin than in my eyes.

I asked my neuro yesterday if mine could be virus related. I explained the issues I have that seem to coincide with my pain. He said no. But he is also the guy who on my first appointment told me I could not have TN because I could touch my face. He wasted a year sending me around to ENT docs. So I do not totally trust his judgement.

I had shingles in 2009 (even though I was only 23 and was not sick or stressed, so I thought). The rash went away quickly but the pain moved up to my face and crossed the midline. They have done all sorts of tests on me to see if I have MS or some kind of auto-immune disease....but I think I just very unfortunately developed not just post herpetic trigeminal neuralgia, but atypical trigeminal neuralgia. I would love to have more information on the shingles/TN connection.

PHTN can affect everything - I have it both sides of my face, teeth, eyes and scalp. It runs around. The eye pain has been the worst. The thought of having a virus is creepy. And having it is pure hell. *&&*# chicken pox!!!!!

AKParham: to gain a better perspective on shingles and Post Herpetic Neuralgia, you can run a search on either term in our search window at top right. There are many postings here. Alternately, you'll find other authoritative data in the top 20 hits returned from a google search on these terms.

Regards, Red