Would a Herpes Zoster virus cause atypical TN and other cranial neuropathies?

General General TN & GPN (Old Site)
1

If I have a dormant virus in my cranial nerve ganglion could it cause TN on the left, then on the right (months later), and other cranial neuropathies? In other words I have had glossopharynagol and geniculate neuropathy, burning mouth syndrome, TN in all 3 branches, etc etc. (also Bells Palsy) or is the herpes zoster virus only associated with TN?

I'm trying to distinguish if I have a virus or blood vessel inflammation from lupus. My MRI revealed nothing. What can they do to find out?

Thanks, Julie

2

Hi Julie,

I'm not familiar with lupus, but I did have herpes zoster in my trigeminal nerve, and have had lots of similar issues. I have been to quite a few neurologists, neurosurgeons, and other specialists, and my impression is that they are not able to tell which issues are caused by the virus, which are caused by compression, which are caused by dental work, or whether some of these caused the other things! They have not been able to tell me which came first (virus or compression or damage). In fact, they don't like to say that there's a causal relationship between the various things at all. My understanding of herpes zoster is that it stays dormant in the nerve -- the neurosurgeon said that there was a good chance it could flare back up if operated on, but in its dormant state the virus itself is not causing the pain. You are asking good questions, and I have heard lots of conflicting information about how this works.

With current MRI technology (or at least the technology I've had access to) they can sort of see that the nerve is compressed, or that parts of it are inflamed, but even that stuff is not all that clear even to experts.

I guess what I'm trying to say is that I don't know that with the current state of medicine/science/technology anyone will be able to answer these questions about which factor is causing the problem. And if someone says they know for sure, they actually may be less correct/informed than the person who says "we don't know"

In the end it might not matter all that much which thing is causing what - they'll try different medications to treat for all of the possibilities and hope that something works. That's been my experience, and I'm also pretty unhappy with it! Having lupus thrown into the mix must make it all so much more frustrating and confusing.

Maybe the science about lupus is developing more quickly and they will learn things that will help you.

mac

3

Thanks for answering me Mac. I totally appreciate it. Seems plausible to me if the virus is in the area it's affecting the rest of the cranial nerves in one way or another (compression or inflammation), right? I'd love to know if there's more of us out there. For me it comes down to treatment. If this is happening from my lupus should I be treated more aggressively for the lupus? With lupus it would be from blood vessel inflammation damaging the myelin sheath on the cranial nerves. Since I'm riddled with peripheral neuropathy I expect that shouldn't be such a big leap, but evidently like you said, it is! My rheumatologist leans towards a virus in there and my neurologist doesn't even associate the other cranial nerve problems with cranial nerves. He said, um vitamin defiency? (for the burning mouth and lips) And the TN he just figures it's idiopathic I guess. Do they not train neurologists in skull based neuralgia's? What the heck is up with the medical community on this subject? You'd think we fell into the abyss here! LOL

Mac, what other kind of symptoms do you have? Do they come and go like mine? I take tegretol and cymbalta (I did lyrica and neurontin and they are no longer effective)

I'm afraid right now to tell my neurologist I just had a TN attack on the OTHER side in my ear (geniculate neuralgia). I have read how neurologists react to atypical TN and I don't want that. What do your docs say?

Thanks again, Julie

4

I have had pain pretty much every day for five years in several branches of the nerve, always on the same side. I have taken all of the drugs you listed, plus a bunch more, although tegretol doesn't help much and vicodin helps the most. I am very tired of going to specialists, because the treatments are miserable and not all that helpful. Your neurologist doesn't sound too helpful, maybe you could find a different one.

5

Oh Mac I'm so sorry about your unrelenting TN pain! I'll consider myself lucky since I don't have it 24/7. Mine comes by way of "attacks". So far they don't last longer than about a week at a time and then several times a day for the first few days then they taper off and I'm usually left with a twitch (like a hemofacial spasm) My last attack in my ear was nothing compared to my first attack which was TN on my left side and all 3 branches. My forehead felt like it was in a vice, and my jaw and teeth felt like someone was trying to pull them out from the inside. My upper cheek pulled to the left towards my eye and contorted my face, the worst of it lasted about 25 minutes (an eternity) and my neck muscles experienced tonus and my neck became paralyzed over to the left. If you would have handed me a gun I probably would have pulled the trigger. I couldn't cry persay but the tears flowed out the corner of my eye while my face spasmed and bolted and well you know the feeling Mac.

I take opiods now for joint and connective tissue pain and inflammatory issues from lupus and it helps a little with the TN but really not until afterwards. During the attacks I can't even function enough to put something in my mouth.

So you had possibly virus induced TN and it is typical, and on one side. So I wonder how I ended up like this if it is a virus? Like you said though I wouldn't want an answer and then have it be wrong.

Again, I'm sorry for your pain. Peace., Julie

6

I think I fall into this category. I was dx’d with Trigeminal Neuralgia last month. I had severe lightening bolt pain in my jaw. I didn’t eat for days. At that visit it was determined that I had shingles (my 2nd time) on the back of neck along my hair line. I dont really remember the appointment that well because I was in so much pain and I was upset, but I do recall my neurologist saying that the virus can travel along the Trigeminal nerve and as you get older the attacks can get more frequent. Right now I’am on Neurontin.

My pain varies and I get waves of it. In my jaw and side of my tongue I get lightening bolts. On the meds it bearable, but it scares because then I sit and wait for the real pain to come. I also had ice pick, burning, almost like my ear needed to pop pain in my ear. That is now better after having the Neurontin increased. I also get a burning pain on my cheek bone and behind my eye. Once that burning reaches my eye there is nothing I can do about the pain and it stays with me for hours. Sometimes after those attacks I get a pulling or tightening sensation in my cheek which isn’t painful but sometimes the next day I will feel like I got punched in the face.

I have an appointment tomorrow with a GP, and I see my neurologist on the 23rd so I’m hoping to have some of my questions answered.

I’m sorry you have so much pain.

7

Herpes Zoster is the virus associated with Shingles. It lies dormant in the central nervous system for all of your life after you have had Chicken Pox. When it goes active, you can have both the rash of Shingles and pain at multiple points in your body including your face and head. This sort of pain is regarded as "post herpetic neuralgia" and it often clears up when the virus is driven back into remission with an anti-viral med (e.g. Valtrex) plus Neurontin.

The Herpes Simplex Virus Type I, on the other hand, is a bit more problematic. There is some speculation in medical literature that this virus can also lay dormant in the body for long periods, and may cause pain in particular nerve distributions such as the trigeminal system or glossopharyngeal nerve, when it reemerges. The mechanism is not yet firmly established as cause-and-effect, as far as I know.

FYI, I know of no imaging process that can confirm inflammation in a nerve. The required resolution and the inherent variability of individual patients' nerve sizes and configurations makes that task very difficult. Compression by blood vessels is often regarded as a confirming condition for a diagnosis of Type I TN, but it is not a "required" condition for either Type I or Type II TN. About 10% or more MVD procedures discover nerve compressions during the exploratory phase, that were never indicated in even the best MRI

Regards and best,

Red

8

Blood test can often test for herpes zoster. I just sent you an email but didn't realize you have all the various cranial nerves involved like me. Herpes zoster can hit any nerve in the body, but you usually get the blisters and rash there too.

Talk to you soon.

9

Red, Your post about the possibility of herpes simplex 1 remaining dormant makes complete sense to me. Thank you so much. Since I had a simultaneous outbreak of cold sores during my last GN attack and I'm prone to herpes simplex 1 all my life, this makes sense to me. My rashes just don't look like or feel like shingles. Because I have lupus I have alot of rashes, but none of them look like shingles.

Since my rheumatologist is sure it's a virus (although he thinks its herpes zoster) perhaps I can try some antivirals and see how it works. If it keeps some of the cranial neuropathies at bay then voila! I understand I'm a bit complicated (and Sheila too) because our lupus causes an autoimmune reaction and inflammation in our nerves (we already have peripheral neuropathy from this) and that it may be doing damage to the myelin sheath on the cranial nerves. Like I said to Sheila, the virus and lupus could be in cahoots (LOL) and we could be symptamatic from both processes.

Either way, MVD is not indicated and obviously wouldn't help. We'd just wake up with teflon between our nerves and the problems would start all over again.

What about botox? If it is inflammation in our blood vessels from lupus, would the good old standard prednisone help? My neurologist was iffy on this but told me to try it., he said "maybe".

Again Red, thanks. I really don't understand why it's so hard to get information about cranial neuralgia's. I know of a few skull based institutes I found while researching, but have yet to find a neurologist locally (in phoenix, az) that specializes in cranial neuropathies. Who specializes in this? Who would I see? I know some ENT's handle skull based problems, but it's really kind of out of their area, isn't it?

Thank you all, Julie



Richard A. "Red" Lawhern said:

Herpes Zoster is the virus associated with Shingles. It lies dormant in the central nervous system for all of your life after you have had Chicken Pox. When it goes active, you can have both the rash of Shingles and pain at multiple points in your body including your face and head. This sort of pain is regarded as "post herpetic neuralgia" and it often clears up when the virus is driven back into remission with an anti-viral med (e.g. Valtrex) plus Neurontin.

The Herpes Simplex Virus Type I, on the other hand, is a bit more problematic. There is some speculation in medical literature that this virus can also lay dormant in the body for long periods, and may cause pain in particular nerve distributions such as the trigeminal system or glossopharyngeal nerve, when it reemerges. The mechanism is not yet firmly established as cause-and-effect, as far as I know.

FYI, I know of no imaging process that can confirm inflammation in a nerve. The required resolution and the inherent variability of individual patients' nerve sizes and configurations makes that task very difficult. Compression by blood vessels is often regarded as a confirming condition for a diagnosis of Type I TN, but it is not a "required" condition for either Type I or Type II TN. About 10% or more MVD procedures discover nerve compressions during the exploratory phase, that were never indicated in even the best MRI

Regards and best,

Red

10

Jujubee,

There are a lot of qualifiers here which I'd gently nudge you to keep in mind. The role of HSV-1 in emerging nerve pain at present is probably best described as a plausible speculation. There's a lot we don't know about the mechanisms involved. Likewise, there really aren't a lot of "anti-viral" meds (I'm personally aware only of Valtrex, used against the Herpes Zoster virus in Shingles).

Botox falls into another gray area, I'm afraid. I've talked with a few patients who have had relief from trigeminal pain for periods of days to a few weeks, following Botox injection. Some patients seem to get almost no benefit, and we don't yet know what distinguishes those helped from those who aren't. The same can also be said for cortico-stereoid anti-inflammatory drugs (Corisone and derivatives). Some patients are helped by cortisone injections-- not a majority, but at least a few.

As for who specializes in cranial neuralgias, the answer is basically as you intuit: there is no dedicated specialty, and one can readily understand why that is: the incidence rate for classic TN pain is about 12 new cases per hundred thousand population, per year. Glossopharyngeal neuralgia is even more rare. This is not a large enough patient cohort to justify medical schools investing in creation of an identifiable specialty, with all that might entail. So what happens instead is that a few specialists within fields as disparate as neurology and anesthesiology decide on their own initiative to make a study of what is known on this cluster of relatively rare disorders, to try to help patients who find their way into the doctor's practice. It is almost a "learn by doing" process.

I'm not sure how much this explanation helps, Jujubeee. But I do what I can to lend clarity or add information for those seeking it.

Regards and best,

Red

jujubeee said:

Red, Your post about the possibility of herpes simplex 1 remaining dormant makes complete sense to me. Thank you so much. Since I had a simultaneous outbreak of cold sores during my last GN attack and I'm prone to herpes simplex 1 all my life, this makes sense to me. My rashes just don't look like or feel like shingles. Because I have lupus I have alot of rashes, but none of them look like shingles.

Since my rheumatologist is sure it's a virus (although he thinks its herpes zoster) perhaps I can try some antivirals and see how it works. If it keeps some of the cranial neuropathies at bay then voila! I understand I'm a bit complicated (and Sheila too) because our lupus causes an autoimmune reaction and inflammation in our nerves (we already have peripheral neuropathy from this) and that it may be doing damage to the myelin sheath on the cranial nerves. Like I said to Sheila, the virus and lupus could be in cahoots (LOL) and we could be symptamatic from both processes.

Either way, MVD is not indicated and obviously wouldn't help. We'd just wake up with teflon between our nerves and the problems would start all over again.

What about botox? If it is inflammation in our blood vessels from lupus, would the good old standard prednisone help? My neurologist was iffy on this but told me to try it., he said "maybe".

Again Red, thanks. I really don't understand why it's so hard to get information about cranial neuralgia's. I know of a few skull based institutes I found while researching, but have yet to find a neurologist locally (in phoenix, az) that specializes in cranial neuropathies. Who specializes in this? Who would I see? I know some ENT's handle skull based problems, but it's really kind of out of their area, isn't it?

Thank you all, Julie



Richard A. "Red" Lawhern said:

Herpes Zoster is the virus associated with Shingles. It lies dormant in the central nervous system for all of your life after you have had Chicken Pox. When it goes active, you can have both the rash of Shingles and pain at multiple points in your body including your face and head. This sort of pain is regarded as "post herpetic neuralgia" and it often clears up when the virus is driven back into remission with an anti-viral med (e.g. Valtrex) plus Neurontin.

The Herpes Simplex Virus Type I, on the other hand, is a bit more problematic. There is some speculation in medical literature that this virus can also lay dormant in the body for long periods, and may cause pain in particular nerve distributions such as the trigeminal system or glossopharyngeal nerve, when it reemerges. The mechanism is not yet firmly established as cause-and-effect, as far as I know.

FYI, I know of no imaging process that can confirm inflammation in a nerve. The required resolution and the inherent variability of individual patients' nerve sizes and configurations makes that task very difficult. Compression by blood vessels is often regarded as a confirming condition for a diagnosis of Type I TN, but it is not a "required" condition for either Type I or Type II TN. About 10% or more MVD procedures discover nerve compressions during the exploratory phase, that were never indicated in even the best MRI

Regards and best,

Red

11

The idea that valtrex would work to eliminate post-herpetic neuralgia differs from what I've been told. I was told that antivirals work to combat an active outbreak of Shingles, but that post-herpetic neuralgia is because of damage that is caused to the nerve by the active shingles, rather than by the dormant virus in the nerve. So antivirals taken promptly when you have active shingles can reduce the likelihood, severity, and duration of postherpetic neuralgia, but once you have postherpetic neuralgia antivirals are not going to help you. Instead, you are dealing with some of the same medications used for TN (e.g. Neurontin) and also have the hope that the PHN may gradually improve.

I have asked a few times whether it would be helpful to take antivirals again, or to have the shingles vaccine, and the answer has been no. If anyone has read anything that says that it would be worth trying antivirals if the episode of shingles is far in the past, I would be very interested.

Seems like there is a lot of misinformation about Shingles -- when I first got it in my 20s, the dr. told me that it was likely a first indicator of some catastrophic immune system issue (that has yet to happen). I would be thrilled to find out that I've been misinformed, because what I've been told is pretty dismal and also quite unclear.

mac

12

Mac, I'm right up there with you. I've never even had shingles, every doctor who has looked at the rash I've had right before a tn or gn attack has said, um no way is that shingles! With me it's tough I suppose since I have lupus and autoimmune issues to begin with, and am extremely photosensitive (break out in hives, lesions, etc) I had one pox looking type rash but my rheumatologist thought it looked like coxsackie. The only symptoms I had at the time were malice, loss of weight, no appetite, low grade fever and muscle weakness. It was pretty scary, as the muscle weakness was a new one to me and I could not walk for several days. He said I had the coxsackie virus in my nerves. He is also the one that said he thought last Oct at my first tn attack that I had shingles, but again, there is no way that rash looked like shingles, however all I had to show him was the scabs that were left and some pics on my phone. I had read up (here!) about shingles and postherpetic neuralgia and I asked him if that rash could have something to do with my tn attack. But in all honesty, that rash didn't resemble shingles at all. They itched, they were poc like but no blistering at all, very very sparse, they healed right away and they did follow a nerve path up my legs.

I am however notoriously prone to herpes simplex 1, have had cold sores all my life, and get them now regularly in my nose, around and on my lips and I could pretty much swear I had one (or something) in my right ear right before the geniculate (tn in my right ear) attack. Coincidence? I think not.

Mac, I am however, immune compromised due to lupus, both to taking pretty high doses of immune suppressants for an overactive immune system during flares and to the nature of the disease itself. I have a very high amount of antibodies in my blood and some immune complexing problems.

Anyway, I've heard that too about antivirals. I had some hope for them. I was told that postherpatic neuralgia was extremely difficult to treat as it is resistant to antivirals, recurring and can be well we know the rest, very painful.

So where does that leave us? What treatment options do we have? Pretty dismal is an understatement. What risks are we running? What is the worst that can happen (besides having recurring TN)?

There's SO MUCH I don't understand and I'm thankful for "Red" here, because he at least understands our questions and answers them the best he can. My doctors aren't concerned (and they should be I think) as I don't want to end up with more and more cranial nerve issues or vagus nerve issues from a virus or from blood vessel inflammation from lupus and have my central nervous system involved which would compromise my organs and oh important things like breathing.

I work, I have some quality of life left and I don't want to lose it. I take tegretol for the TN and opiates if needed. I did neurontin for years for peripheral neuropathy and also lyrica and it stopped working for me. I take cymbalta for the PN now.

Lets keep in touch on what we learn. Thanks all, Julie

13

I saw my GP today. I was dx’d with Post Herpatic Trigeminal Neuralgia. The way he explained this to me was the ‘herpes’ virus damages the Trigeminal root during its active state. The virus from the spinal cord travels along a nerve path. In my case it was the Trigeminal nerve.
If antivirals (valtex) aren’t taken within the first 2days of the outbreak that they are basically useless and will not help with post herpatic neuralgia.

I had shingles 20 years ago (my 2nd bout was 2 months ago). He believes the first outbreak set the stage for the damage to the Trigeminal root. He said that if I wanted I could get the shingles vaccine now and pay out if pocket for it since I am under 60,but that all that it would do is keep shingles from flaring up as frequently. It will not rid me of the damage and pain done by the virus.

I am now on Neurontin 4 times daily, up from 2 times but at a lower dose. Adding in other meds as we go along.

I hope this helps.

14

I'd intended to communicate pretty much what Jennifer did: Valtrex is used to push the virus back into remission and dormancy. Few doctors will prescribe Valtrex for longer than a few days and generally only immediately after Shingles is suspected. The neuralgia can last much longer even after the virus is again in remission. For some reason, however, Neurontin has been found to be more effective than some other meds in its class, for bringing post herpetic neuralgia under control.

In my wife's case, for instance, she began to have a flush on one side of her face and a rash developed in her hair on that side. I suggested that she be seen immediately at an urgent care clinic. She was treated with Valtrex for the virus, for about a week. Her Neurontin was increased to 3600 mg per day for about a month, then tapered back to 2400 per day which she has used for almost 10 years, both before and since the PHN incident. Her facial pain returned to low levels under management with Neurontin, within six weeks of the appearance of the rash.

So my bottom line here is that "nerve damage" caused by Shingles and neuralgia accompanying Shingles seems to be different in kind than the longer lasting damage which doctors call "facial neuropathic pain" or sometimes "atypical TN". Though it can take weeks or even months for the pain to subside from PHN, it very often does.

Regards and best,

Red

15

Hi Red,

I was having some issues before shingles, and it sounds like maybe that was the case for your wife, as well. But when you go to the neurologist with PHN, they really resist the idea that something preceded the PHN. Even when other issues are well documented, it kind of throws you into a grey area. But what you're describing reflects my understanding, as well. thanks!

mac

16

The TN attacks are pretty violent. My first was all 3 branches, my left forehead felt like it was in a vice, my cheek was being pulled over to my eye which was twitching and in spasm. The spasm lasted weeks after the cluster of TN attacks that lasted a weekend, on and off and varying in intensity. It felt like someone was trying to pull my teeth out of my mouth from the inside. My neck and head twisted and the muscle went into tonus where I was paralyzed there and couldn't move it while my cheek jerked around in spasms. All the while lightning like bolts zapped through the left side of my face.

Does this mean that my trigeminal nerve is damaged from the hpn permanently? IF that's what it is and I'm not suffering from blood vessel inflammation from lupus, then why wouldn't an mvd be helpful? If the nerve is damaged then wouldn't separating it from the nearby vessels prove helpful in controlling the TN? If the fifth nerve and the glossopharyangal is my biggest problem, couldn't a surgeon go in there and fix those two so the pain stops?

I know I sound stupid and I'm sorry. I'm just suffering.

Thanks, Julie

17

Actually Mac, I'd find it HIGHLY surprising if a neurologist "resisted" the idea of a pre-existing TN condition prior to emergence of PHN as an additional factor. The patient, after all, would have one or more prescriptions for control of the preexisting condition. Unless no prior diagnosis had been rendered, the neurologist would be highly out of order to "resist" the patient's report of previous neuralgia-form issues...

Regards, Red

mac said:

Hi Red,

I was having some issues before shingles, and it sounds like maybe that was the case for your wife, as well. But when you go to the neurologist with PHN, they really resist the idea that something preceded the PHN. Even when other issues are well documented, it kind of throws you into a grey area. But what you're describing reflects my understanding, as well. thanks!

mac

18

It was three years of root canals, bite adjustments, severe headaches, etc., all on one side. But no diagnosis, no tegretol, etc. The first three doctors I went to also missed the shingles diagnosis. I wish that I had been more persistent and less stoic in the beginning, but I figured the doctors knew best.

19

Jujubee, there are several factors at work here. One thing that I note from your narrative, is that you might possibly be dealing with neuralgia type conditions in as many as THREE nerves. The twitching in your face is characteristic of so-called "hemi-facial spasm", which involves a nerve other than the Trigeminal (5th cranial) and Glossopharyngeal (10th cranial??? I don't recall precisely). The twisting of your head and neck could also relate to a FOURTH and unrelated nerve condition (Torticullis).

All of this must be qualified against the reality of your Lupus, Jujubeee. Lupus causes systemic inflammation. But TN for the most part is NOT an inflammatory condition and is rarely helped a lot by anti-inflammatory meds such as used in Lupus.

PHN on the other hand is characterized as an inflammation of the nerve caused by the Herpes Zoster virus when it comes out of dormancy. and I've never heard of a case where that inflammation caused permanent damage. It can take quite a while (weeks to months) for the nerve to "settle down" and for anti-seizure meds to take effect in managing PHN pain. But Neurontin in particular has an established track record of reducing trigeminal pain that is initiated by PHN. And many people whose pain is driven into remission can later be taken off Neurontin.

So I would encourage you NOT to assume that you have permanent nerve damage from either Lupus or PHN, Jujubee. You and your neurologist and rhumatologist need to conference, to work out a medication management plan that is appropriate for your combination of conditions, and effective in managing your facial pain.

Unless an MRI has revealed a definitive compression of one or more nerves by one or more blood vessels, I would personally doubt that you are a good candidate for MVD. And I can tell you from having talked to a number of neurosurgeons over the past 17 years, that most will want you to make every effort to get the PHN pain under control medically before they do surgery for what is presumed to be "Type I TN" in just the 5th cranial nerve. '

PHN pain doesn't respond to decompression of the nerve, and could be aggravated by a surgery. And it's really tricky trying to separate out which is which, especially against the background of Lupus effects. But a three-way consultation is definitely a positive first step toward figuring out what should be attempted in what order.

Go in Peace and Power

Red

jujubeee said:

The TN attacks are pretty violent. Mine was all 3 branches, my left forehead felt like it was in a vice, my cheek was being pulled over to my eye which was twitching and in spasm. The spasm lasted weeks after the cluster of TN attacks that lasted a weekend, on and off and varying in intensity. It felt like someone was trying to pull my teeth out of my mouth from the inside. My neck and head twisted and the muscle went into tonus where I was paralyzed there and couldn't move it while my cheek jerked around in spasms. All the while lightning like bolts zapped through the left side of my face.

Does this mean that my trigeminal nerve is damaged from the hpn permanently? IF that's what it is and I'm not suffering from blood vessel inflammation from lupus?. If it is then why wouldn't an mvd be helpful? If the nerve is damaged then wouldn't separating it from the nearby vessels prove helpful in controlling the TN? If the fifth nerve and the glossopharyangal is my biggest problem, couldn't a surgeon go in there and fix those two so the pain stops?

I know I sound stupid and I'm sorry. I'm just suffering.

Thanks, Julie

20

Interesting -- I wonder if getting the shingles vaccine would eliminate other types of nerve damage. I also had shingles over 20 years ago on my back shoulders. I will ask my neurologist about this next month and let you know if he says anything worth adding.

Jennifer G said:

I saw my GP today. I was dx'd with Post Herpatic Trigeminal Neuralgia. The way he explained this to me was the 'herpes' virus damages the Trigeminal root during its active state. The virus from the spinal cord travels along a nerve path. In my case it was the Trigeminal nerve.
If antivirals (valtex) aren't taken within the first 2days of the outbreak that they are basically useless and will not help with post herpatic neuralgia.

I had shingles 20 years ago (my 2nd bout was 2 months ago). He believes the first outbreak set the stage for the damage to the Trigeminal root. He said that if I wanted I could get the shingles vaccine now and pay out if pocket for it since I am under 60,but that all that it would do is keep shingles from flaring up as frequently. It will not rid me of the damage and pain done by the virus.

I am now on Neurontin 4 times daily, up from 2 times but at a lower dose. Adding in other meds as we go along.

I hope this helps.