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Trigeminal Neuralgia Message Board
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Old 01-14-2007, 07:05 PM   #1
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mysterylover HB User
Genital Post Herpetic Neuralgia???

Has anyone on this board ever been diagnosed with "Post Herpetic Neuralgia" of the genitals? I was diagnosed about one month ago. I take 1 gram on Valtrex daily but still am in pain almost constantly. I don't have any lesions just nerve ending pain. I was wondering how long this lasts and what you do about it.

 
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Old 01-18-2007, 03:44 PM   #2
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Re: Genital Post Herpetic Neuralgia???

Hi im sorry i cannot answer your question but i just had a question for you. how did u get diagnosed with that? what are your symptoms?? and how does that happen to certain people? thanks

 
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Old 01-18-2007, 04:59 PM   #3
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Re: Genital Post Herpetic Neuralgia???

Hi back,

Apparently it's very, very rare in genital herpes. Mostly people with shingles get it. It's pretty common with shingles I guess. My symptoms were prodromal pain in my old lesion areas, but no lesions as all. I have had pain starting in Sept. and began taking my acyclovir on a regular basis. Then I had some heart problems and my stress level went thru the roof and my neuralgia pain became UNBEARABLE. My doc. put me on 1 gram. Valtrex daily and told me I had Post Herpetic Nueralgia and I could be looking at pain for as long as a year or two!! I have been off work since Thanksgiving. My pain is about 15% now but I still deal with it daily. I can't wear tight underwear or pants as the pain is like electricity. My doc says she has two other female patients with it. I can't find anything on this website or the internet relating to it except a few blurbs here and there so was SO HOPING that someone here heard of it. I have read that Valtrex can aggrevate prodromal symptoms so have also asked help with that question. I'm scared to go off, I'm scared to stay on (my hair has been falling out). Anyway, that's it. Thanks for asking.

 
Old 01-18-2007, 09:47 PM   #4
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Re: Genital Post Herpetic Neuralgia???

oh okay. i was just wondering because i've had slight burning down there for over 3 months. never any relief. ive tried meds. didn't seem to do much. now im just trying to do the herbal stuff. im wondering maybe i have like a rare case or something because i got type one from oral sex from someone who never had a cold sore in his life because he's the only one i've been with. so now im thinking about all the possibilities my case is really bad and is causing more problems. i recently had surgery i had a cyst on my ovary and then 2 months later this happens. im really parinoid. thanks for responding.

 
Old 02-12-2007, 07:44 AM   #5
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Re: Genital Post Herpetic Neuralgia???

I have a question. My daughter has this problem as well. She was dx about 4 years with HSV2, how we found out was through her bout of meningitis. She's never had any out breaks. All she has is headaches and the nerve pain in her foot and legs. Most doctors seem to think she is crazy, but I've read somewhere that is a part of the symptons. My question is what doctor would you suggest she go too? Should she go to a neurolgist or a disease specialist doctor? thanks an advance for your help.

 
Old 02-12-2008, 07:28 PM   #6
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inanutshell HB User
Re: Genital Post Herpetic Neuralgia???

I was diagnosed a little over year ago and immediately began taking valtrex like you. The pain was not so bad until I had to stop taking valtrex due to cost when I switched insurances. Ever since then, I've had pretty bad pain in my right hip and lower back which gets pretty severe during an outbreak. It got so bad. I could barely extend my leg back or my back. I also get what I call "skin pain" (you know how your skin feels when you get the flu and everthing, even your clothes, hurt you).

I finally went to a new doctor today (due to my insurance not accepting my other provider) and she immediately prescribed me lyrica. She couldn't believe that I had been walking around and working and going to nursing school with the amount of pain i had been in. She said for some reason, my body just does not tolerate the virus which is why i get such frequent outbreaks and constant pain.

Lyrica is a similar drug to neurontin (gabapentin) that treats nerve pain. I took one tonight and I've finally had some relief! Its been soooo long. The only problem....weight gain. from what i've read, people can gain up to 20lbs on this, but mainly those are people with fibromyalgia who need to take this drug three times a day in large doses. My dose is relatively small. Hope this helps!

 
Old 03-02-2008, 09:29 AM   #7
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Re: Genital Post Herpetic Neuralgia???

mysterylover, I almost fell over when I read your posts, I have hsv1 and I have an OB every month with my period. I have had lots of pain when i dont have an OB and I'm always telling my husband that I don't think this is right because I don't here of anyone else on the boards complaining of my symtoms. I feel like my whole private area is bruised, it hurts to sit, and then I will get electrical shock pains, I get them in my butt cheeks sometimes, but mostly in the vaginal and rectal area and my skin never feels right it is always sore. This all started in January of this year and has not improved at all. Please let me know how you do on your new medicine. I almost forgot, I have never been on antivirals for this, I just got my first persciption the other day. Im worried that not talking them may have made things worse for me. Thanks for sharing your story. Good Luck

 
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