teflon, yes?
Hello everyone,
I have TN and MAV (Migraine Associated Vertigo, like Menieres desease), both started one and a half year ago.
Recently a doctor found out that I have the HSV-1 virus that stays active all the time.
Ellis.
thanks for sharing
bob said:
Mmm.....Interesting! I have HSV-1 many outbreaks of sores controlled nicely with Valtrex. Kills em dead! Not sure if it was my cause of TN though. MRI showed a vein laying across and along my nerve. They went in and separated the two and bingo no pain!
Just my thoughts. :)
I've found lots of information on how the HSV1 virus DOES sit inactive in the Trigeminal Ganglion. In some people it is thought to come out of dormancy and cause TN. But not in all people. Shingles herpes zoster does the same thing. I'm trying to put together as much info as I can about it. Thanks, really, for opening up. Love Julie
Strange thing is, I got chickenpoxs for the first time in my life when I was 40 (7 years ago. TN and MAV started 1.5 years ago).
I found:
The Varicella-Zoster virus (VZV, human herpes virus type 3) kan cause:
- Varicella (chickenpox) : this is the primairy infection.
- Herpes Zoster (Shingles) : the second clinicle manifistation of the VZV infection.
The nervus trigeminus plays a part in Herpes Zoster.
Ellis.
hi I have been getting sores on my tounge for 2 ys now and when I get them them my right ear hurts very bad. is this tn related and if so which virus is this and what kind of doc do I go to for this? I went to a lot of docs and they had no clue what this was
Yes. Here's some more info and there's several discussions here about it as well. http://hsv1cranialneuropathies.blogspot.com/2012/10/virology-hsv1-dormant-in-trigeminal.html
Some TN patients here have had good results with acloyvir and other anti-virals in resolving some TN issues. My personal belief is that there is a much more complicated relationship between TN and HSV1 then previously thought. The above blogsite has several clinical abstracts supporting the medical info that hsv1 can cause cranial neuropathies like TN. It has been confirmed that hsv1 in addition to the herpes zoster virus can lay dormant and cause Bells Palsy-another cranial neuropathy.
Love and HUGS, Julie
ps your not alone!
Hi Julie
Thanks for the link…but I can’t open it, even when I copy and paste.
And tonight I’d really like to read it because I have one big bad cold sore erupting today. I’ve had a busier week than I can handle visiting and helping my daughter who is eight months pregnant, even chanced a fiddle concert last night. Almost thought I got away with it. Took extra meds and was thrilled to be OUT! My upper lip on my bad side was giving me all the signs, and I held it down to ward off hemifacial spasm. You’d think I’d learn! This bugger always finds a way to show itself…
Bellalarke
Bellalarke said:
Hi Julie
Thanks for the link...but I can't open it, even when I copy and paste.
And tonight I'd really like to read it because I have one big bad cold sore erupting today. I've had a busier week than I can handle visiting and helping my daughter who is eight months pregnant, even chanced a fiddle concert last night. Almost thought I got away with it. Took extra meds and was thrilled to be OUT! My upper lip on my bad side was giving me all the signs, and I held it down to ward off hemifacial spasm. You'd think I'd learn! This bugger always finds a way to show itself...
Bellalarke
I have started wondering about all this myself. I had chicken pox REALLY bad as a child and I have wondered if the virus stored in my system hasn't damaged my trigeminal nerve. Also, recently diagnosed with shingles too, and this was about 8 months post diagnosis of the TN! Lucky for me, it was a golf-ball sized spot that hasnt caused me pain because I was already on anti-convulsants. It's better already. About half way gone........maybe more. Maybe there should be an extensive study on this!
http://hsv1cranialneuropathies.blogspot.com/http://hsv1cranialneuropathies.blogspot.com/
Bellalarke said:
Hi Julie
Thanks for the link...but I can't open it, even when I copy and paste.
And tonight I'd really like to read it because I have one big bad cold sore erupting today. I've had a busier week than I can handle visiting and helping my daughter who is eight months pregnant, even chanced a fiddle concert last night. Almost thought I got away with it. Took extra meds and was thrilled to be OUT! My upper lip on my bad side was giving me all the signs, and I held it down to ward off hemifacial spasm. You'd think I'd learn! This bugger always finds a way to show itself...
Bellalarke
I see a neurologist for TN and am on antiseizure meds tegretol. The sores can be biopsied by a dermatologist and a GP can do a VIRAL test to see if you have hsv in your blood. I would start there.
michelle said:
hi I have been getting sores on my tounge for 2 ys now and when I get them them my right ear hurts very bad. is this tn related and if so which virus is this and what kind of doc do I go to for this? I went to a lot of docs and they had no clue what this was
http://hsv1cranialneuropathies.blogspot.com/ There are lots of blogs there on clinical abstracts about hsv1 and cranial neuropathies. Most docs won't accept it yet but some are giving patients anti-virals anyway and they are helping. You can tell your GP this and ask. If you have the cold sores you can ask your doc for an anti-viral for it. See this article on hsv1: http://www.medicinenet.com/herpes_simplex_infections_non-genital/article.htm
Bellalarke said:
Hi Julie
Thanks for the link...but I can't open it, even when I copy and paste.
And tonight I'd really like to read it because I have one big bad cold sore erupting today. I've had a busier week than I can handle visiting and helping my daughter who is eight months pregnant, even chanced a fiddle concert last night. Almost thought I got away with it. Took extra meds and was thrilled to be OUT! My upper lip on my bad side was giving me all the signs, and I held it down to ward off hemifacial spasm. You'd think I'd learn! This bugger always finds a way to show itself...
Bellalarke
Well, I have the mouth sore and increased ear pain. But it could be caused by trying to quell it with Topamax. Or the mouth sores could also be caused by Effexor. Or it could just be TN. I don't know. the neuro said before he didn't think it was PHN. So I am at a losss as to what the heck it is. But I sure don't like these las two mouth sores. They are lastin and when I brush my teeth the paste gets orange. Almost makes me wonder if there is puss in them. IDK. !!!!! Blagh. :(
I more notice that I have a TN attack just after an outbreak of cold sores. Because I have systemic lupus I get alot of sores and rashes. But a cold sore is a cold sore, lol. You may have something infected, could be. A small outbreak of cellulitis can happen on your face..??
I get a rash that is very similar to chicken pox without the blisters along my nerve paths that itch. They don't really pock up and they don't have the pus inside like chicken pox do. But yours sounds like it might. Idk. I'm finding out there are SO MANY variations of herpes viruses that we could have any of a hundred subtypes!
Just a thought. I think maybe you can ask your GP to do a viral test so you can know for sure what virus it is. You have to catch it while you have it. I need to that also with my GP.
Hugs, Love Julie
Min said:
Well, I have the mouth sore and increased ear pain. But it could be caused by trying to quell it with Topamax. Or the mouth sores could also be caused by Effexor. Or it could just be TN. I don't know. the neuro said before he didn't think it was PHN. So I am at a losss as to what the heck it is. But I sure don't like these las two mouth sores. They are lastin and when I brush my teeth the paste gets orange. Almost makes me wonder if there is puss in them. IDK. !!!!! Blagh. :(