I have done some research lately and have come across several articles that state some Dr.s believe that TN attacks can be caused by Herpes attached to the TN nerve. Just like cold sores that come and go, the same can happen with TN since the virus is already in the body.
Ironically, I occasionally get a cold sore on my upper left lip. The same side of the face where I have my jaw pain.
A nurse that my wife knows, said her husband has TN and they were told it was from herpes and he no longer suffers and takes Acyclovir when a problem arises.
Just curious if anyone else has been treated this way. Maybe there is hope that someday the pieces of the puzzle will all come together and this terrible disease with go away. John
TN and Post Herpetic Neuralgia are two separate disorders that produce similar symptoms in the trigeminal nerve distribution. PHN can affect other areas of the body besides the face. There is speculation that Herpes Simplex I (different from Herpes Zoster, which causes Shingles and PHN) may also be implicated in some cases of symptomatic trigeminal neuropathy pain. But I've not yet seen a satisfying or complete exploration of the links.
Hi John! I'm new here. Yes, the herpes virus sits dormant. It can cause shingles which can cause TN. It is called postherpatic neuralgia. It DOES attack the trigeminal nerve. So, YES, it CAN be related. The trigeminal nerve (3 branches to different parts of the face) is located in the 5th cranial nerve. The SAME dormant virus can reactivate and cause pressure / damage to the 7th cranial nerve and cause Bell's Palsy.
Does that make sense? As far as taking acyclovir to prevent a TN attack...I do not think so. Acyclovir is to treat shingles.
This is how my neurologist has explained it to me. He also said that the TN, once I've had it, unfortunately WILL recur with or without getting shingles again...
It's all confusing to me. Whatever it is I hope this TN never comes back! Julie
Julie, the virus that causes Post Herpetic Neuralgia is Herpes Zoster -- NOT Herpes Simplex which causes cold sores. If Shingles is kept from reemerging, then the Post Herpetic Neuralgia that comes along with Shingles should also be controlled.
Oh yes, about the herpes zoster. It's all confusing to me. According to my neurologist...and mind you, I may not have had shingles...if I DID have shingles it was the mildest case ever heard of....but he did say that it is TN and it is from the shingles and that now that I have had TN once that it's likely here to stay/recur. He said his patients who have TN from shingles are treated symptomatically of course, and that they have recurring attacks of Trigeminal Neuralgia.
I've had nerve problems for almost 25 yrs now...as far as being interesting though about the cold sores...I have always gotten them quite a bit...herpes simplex 2...all my life.
I don't know WHAT caused the TN Red. I have systemic lupus and have so many WEIRD problems....so who knows...
I hope ur right and I go get the shingles vaccine, never get them again and never get TN again. Julie
I have a relative with a similar situation. She had TN for 20 years with multiple attacks daily.
Then she was started on valtrex for an hsv1 eye infection.
The valtrex stopped the episodes of TN. She stayed in remission for some time, but then the TN relapsed. The valtrex worked again and stopped the TN. Now she is on a low dose suppression with valtrex and has no TN
HSV lives in the nerve ganglion tht causes TN. after seeing my relative respond to valtrex I would want a trial of valtrex before consenting to more aggressive procedures
I had shingles 20 years ago due to stress (building a house and getting married within the same 3 months at 21 is not recommended) and it was on my shoulders. When I feel stressed I get the same prickly type of pain in my shoulders but it has not re-emerged visibly or to the extent of pain. This might be a stupid question but can shingles come back mildly in another location and possibly go unnoticed? Also if the Herpes Zoster causes the Post Herpetic Neuralgia will the TN go away when the virus goes away? Is it possible that the unexplained virus I had that showed up around the same time as the TN came was shingles?
Richard A. "Red" Lawhern said:
Julie, the virus that causes Post Herpetic Neuralgia is Herpes Zoster -- NOT Herpes Simplex which causes cold sores. If Shingles is kept from reemerging, then the Post Herpetic Neuralgia that comes along with Shingles should also be controlled.
In my case it was determined that my rash before my tn attack was not shingles (I have lupus and have lots of different type rashes) . I've since experienced more cranial nerve problems and I'm going to see a cranial neurologist. But I was told that PHN post herpatic neuralgia is one of the most difficult conditions to treat and that the TN does not go away when the rash goes away, but lays dormant in the nerve and can act up at anytime. Best of luck, Love Julie
In reply to Collette, Post Herpetic Neuralgia may persist beyond the time when the Shingles (Herpes Zoster) virus is still active. Even anti-viral meds do not kill off the virus entirely -- just drive it back into remission within the central nervous system. From what I've read, perhaps the most effective combination in treating PHN is Neurontin and Valtrex (which is specific to Shingles).
I agree with Red, because that is how I was just treated for shingles (my 2nd outbreak along my neck) - With Neurontin and Valtrex. My neurologist said that I should expect more outbreaks as I get older. I was also dx'd with TN and will be adding Tegretol at some point. Right now my pain is at bay with the Nerontin, although I had my 2nd bought of breakthrough pain last night and about 2 weeks ago.
Sorry to hear you are having more pain Jennifer. So did the shingles cause your TN(Post Herpetic Neuralgia)? Does your TN fade away when the virus is not active and then only recur if the shingles recur? If you keep getting shingles does this mean your immune system is compromised or is it just a lot of stress that is causing the recurrences for you? It sounds like your neurologist is on top of the best treatments for you and that you are in good care. Take care.
Jennifer G said:
I agree with Red, because that is how I was just treated for shingles (my 2nd outbreak along my neck) - With Neurontin and Valtrex. My neurologist said that I should expect more outbreaks as I get older. I was also dx'd with TN and will be adding Tegretol at some point. Right now my pain is at bay with the Nerontin, although I had my 2nd bought of breakthrough pain last night and about 2 weeks ago.
Thanks Collette. Honestly, I'm not sure? She was originally treating me for migraines. So when I called her office to tell her I was having pain, she didn't call me back for days. When I finally got into her office (almost a week later, I could hardly speak from the pain in my face, and hadn't eaten anything substantial in 5 days. When I described the pain and what was happening while eating she said TN and wrote it in big letters on my chart. Then when she was examining me, she asked if I ever had shingles. When I said yes, she said I think you have them again, but by then they had started to heal. On my chart she put 'possible shingles'. She prescribed me Valtrex and Neurontin and said that she would add Tegretol later.
I was in so much pain, and in 'crisis mode' when I saw her, so I really don't remember all that she said. Just that I could expect this more often. I have another appointment in a couple of weeks and hope to get more clarity on this.
Sorry this was so drawn out. : )
collette said:
Sorry to hear you are having more pain Jennifer. So did the shingles cause your TN(Post Herpetic Neuralgia)? Does your TN fade away when the virus is not active and then only recur if the shingles recur? If you keep getting shingles does this mean your immune system is compromised or is it just a lot of stress that is causing the recurrences for you? It sounds like your neurologist is on top of the best treatments for you and that you are in good care. Take care.
Jennifer G said:
I agree with Red, because that is how I was just treated for shingles (my 2nd outbreak along my neck) - With Neurontin and Valtrex. My neurologist said that I should expect more outbreaks as I get older. I was also dx'd with TN and will be adding Tegretol at some point. Right now my pain is at bay with the Nerontin, although I had my 2nd bought of breakthrough pain last night and about 2 weeks ago.
I also wanted to add that she did some tests on my face, ear and neck with q tips and some other things - I think to stimulate pain? She also checked for TMJ.
I am sorry to hear that. Eating used to be my joy, not so much anymore. I try to keep some pureed soup in small containers in the freezer for when that happens to me again. I know what you mean about not really remembering the appt, I found that I was so dopey and it was such a fast appt that she did not even want to hear about my prior problems (shingles, vertigo, pressure in my head). Please let me know how your next appointment goes. My neuro office just called to say there was a cancellation for tomorrow (3 hours away) but my MRI is tomorrow and I think there is no point until that is done. Hopefully there is a cancellation again soon. Best of luck.
Jennifer G said:
Thanks Collette. Honestly, I'm not sure? She was originally treating me for migraines. So when I called her office to tell her I was having pain, she didn't call me back for days. When I finally got into her office (almost a week later, I could hardly speak from the pain in my face, and hadn't eaten anything substantial in 5 days. When I described the pain and what was happening while eating she said TN and wrote it in big letters on my chart. Then when she was examining me, she asked if I ever had shingles. When I said yes, she said I think you have them again, but by then they had started to heal. On my chart she put 'possible shingles'. She prescribed me Valtrex and Neurontin and said that she would add Tegretol later.
I was in so much pain, and in 'crisis mode' when I saw her, so I really don't remember all that she said. Just that I could expect this more often. I have another appointment in a couple of weeks and hope to get more clarity on this.
Sorry this was so drawn out. : )
collette said:
Sorry to hear you are having more pain Jennifer. So did the shingles cause your TN(Post Herpetic Neuralgia)? Does your TN fade away when the virus is not active and then only recur if the shingles recur? If you keep getting shingles does this mean your immune system is compromised or is it just a lot of stress that is causing the recurrences for you? It sounds like your neurologist is on top of the best treatments for you and that you are in good care. Take care.
Jennifer G said:
I agree with Red, because that is how I was just treated for shingles (my 2nd outbreak along my neck) - With Neurontin and Valtrex. My neurologist said that I should expect more outbreaks as I get older. I was also dx'd with TN and will be adding Tegretol at some point. Right now my pain is at bay with the Nerontin, although I had my 2nd bought of breakthrough pain last night and about 2 weeks ago.
While I understand that PHN is known to be caused by Herpes Zoster I am wondering now if Herpes Simplex 1 could also be a cause. I was recently diagnosed with TN and have never had Shingles, but since I was a small child I have suffered from cold sores (herpes simplex I) which I assume was passed to me from a family member or friend of the family.
It seems almost too much of a coincidence that my first TN episode (which was only a month ago) started to occur the exact same day that I also had a cold sore outbreak start... a bad one too as I had two sores on my lips. Has anyone else heard of Herpes Simplex being the cause of PHN and not just Herpes Zoster? I wonder if I should mention the possibility that I might have PHN over TN to a doctor?
I have type 2 pain but have often wondered if what I have is a form of shingles because at the time I got this I was losing my house and was devestated!
natalie I would mention this to ur doctor for sure no one knows why tn happens and if so i think anythings a possibility! When you take the medicine or put the medicine on your cold sores does it help your tn?
Natalie Sutton said:
While I understand that PHN is known to be caused by Herpes Zoster I am wondering now if Herpes Simplex 1 could also be a cause. I was recently diagnosed with TN and have never had Shingles, but since I was a small child I have suffered from cold sores (herpes simplex I) which I assume was passed to me from a family member or friend of the family.
It seems almost too much of a coincidence that my first TN episode (which was only a month ago) started to occur the exact same day that I also had a cold sore outbreak start... a bad one too as I had two sores on my lips. Has anyone else heard of Herpes Simplex being the cause of PHN and not just Herpes Zoster? I wonder if I should mention the possibility that I might have PHN over TN to a doctor?
This is very interesting as i get awful coldsaws all over my lips and up my nose and when they come my pain is worse :s might be worth a mention do you think xx
My aunt had TN for years with frequent attacks daily. She was treated for another problem with valtrex, a drug for herpes infection and the TN stopped. Later the valtrex was stopped and she started to have pain again.
Amazingly when the valtrex was restarted the TN stopped again. After one more episode of starting and stopping the drug with benefit, the doctors agreed to put her on suppression or maintenance therapy with valtrex. On this drug she has only had one episode in two years.
It appears to me that she has benefited from antiviral treatment directed at herpes. I wouldn't be surprised if there were other patients who would benefit from valtrex therapy
I have TN episodes every time I have a cold sore attack. I have no doubt herpes simplex 1 does not lie dormant in the trigeminal nerve ganglion and that there is a more complicated relationship between TN and herpes simplex 1 than is currently known or accepted in the medical community.
Been meaning toanswer your post for awhile, sorry took me so long!