I developed chickenpox as an adult in 1991. In 2001, after a period of extreme stress, I developed pain in my left eye, left side of my face, and left side of my scalp. It eventually went away on its own. I saw an eye doctor who said I had "fifth nerve syndrome." Over the years my eye throbbed a little but went away. I had another stressful event recently and developed full-blown, horrible pain in my left eye, then both eyes, pain in my scalp, in my cheeks, and finally had an excruciating attack of burning pain in both cheeks. I finally discovered I had TN. Does anyone else have TN from the herpes virus? What has helped you? For this episode I took Neurontin (Gabapentin) for a few days but I could not tolerate the side effects (it never bothered me before). Then I tried Acyclovir and had more bad side effects. Currently I am on Trileptal, taking pills (1-1/2 two times a day) made me almost dizzy and made me feel AWFUL, but I saw my internist yesterday and he wants me to up the dosage again for one week, so I just started today (1-1/4 pills two times a day) and will continue to try to increase my dosage. Also have Voltaren for my eyes (ouch! burns!) and Hydrocodone/Acetaminophen for my cheek pain (this helps). He will refer me to a neurologist if I haven't improved after one week. I feel like the painkillers are helping, but its just a bandaid. I really would like to find out what others have used that actually makes the virus not act up. I know I always will have it. Any advice is greatly appreciated!!!
I have TN and they recently found out by bloodtests that I have an active Herpes Virus. My doc says there may be a link with my TN.
Like you I also developed chickenpox as an adult, I was 40 years, so about 6 years ago. Developed TN six years later. It's possible that me having chickenpox has something to do with it.
The are now going to check my immunesystem.
So yes, there are people who've had chickenpox and now having TN. Me.
Not that I'm glad... ;-)
Hope you're much better now since that time you wrote this post in 2010.
there are a few people who have had similar situations; I also saw one old Russian study from the 90’s that found much higher levels of herpes zoster virus in TN patients, so is it a possibility? jury is out, but I don’t think we can discount it. have you tried vanacyclovir (Valtrex)? some ppl seem to have less side effects with it. the hard part is that we don’t know if it will have any effect at this point, b/c it’s the most effective in early stages of an outbreak. good luck on finding pain relief!
Thanks for your reply! Helps me a lot! And very good to know
My prof mentioned antivirals like valacyclovir etc, but when you stop meds, the outbreak may return again, so he thinks it's better to check my immune-system first (to find out why this happens all the time, why the virus stays active). Seeing an immunologist within two weeks.
I've been on Lyrica and that is helping subdue my symptoms. No one has suggested I see an immunologist so that will be interesting to hear what you are told. My usual blood tests all come back OK, let me know what test you had. I also have severe dry eye which is now being treated, I thought it was the usual TN pain. Still have face pain (mostly cheeks) but Xanax is helping some with that. Should we all boycott chickens?
I also have problems with my eye; I sometimes had 'burning tears', and more often I have little needle-stings behind it. Can't describe it any better, sorry!
If avoiding chickens would do the trick, sign me up!
I"m seeing my regular doctor in November, will ask for this blood test. HSV stays active just so we can have our own personal, special hell. That's it.
Well that's interesting! I had an active Epstein Barr virus in 1982 when I developed Interstitial Cystitis in my bladder. The doctor had me drinking some "Pao De Arco" or something like that tea to get rid of the virus. The only way I got rid of the IC was not eating spicy foods and avoiding doctors. They did so much harm to me - like putting a form of chlorox in my bladder (twice). It's diffficult having a rare form (PHTN) of a rare disease (TN). Doctors basically guess at what to do.
Sally said:
Hi, I had Epstein Barr Virus before I had TN. It's part of the Herpes Zoster Virus. Or Mononucliosis.
just FYI: the herpes “chickenpox” virus is caused by herpes zoster. HSV is the heroes sumplex virus, which is a different strain. i don’t know if that helped but just wanted to let you know before you head to the doctor.