[hemyinspain (OP)]

I have had recurrent severe cold sores for years, they come one after the other in various places on my face, inside my nose both sides, in my eyes, and ears, and I feel very very ill when I have them with all the nerve endings on the side of the face affected into my teeth and even into my head where i cannot bear to touch my face or hair.
I get a temperature, and swollen glands.
A year or so ago my GP put me on a maintenance dose of Acyclovir 400mg ever day.  I have to say that for a year i did not have a single outbreak.  then I did have an outbreak, no where near as bad as the previous ones and zapped it with Valtrex 500mg 5 times a day (double dosed in the first instance)
However I now have had three outbreaks one on top of the other despite the valtrex and acylovir.  going on now for 6 weeks almost.  I am not sure if they have been started because I had ICP Bolt pressure monitoring carried out at the beginning of November.  Does anyone think this could be the cause of this very long outbreak? (This involved screwing a bolt into my skull and through to the meningies and brain with a cable left in place for a week to measure liquid levels surrounding my brain as I suffer chronic severe headaches every day and they were trying to see if I had low CSF pressure)
This particular time it is inside my top lip my nostril and left eye and whilst the valtrex stops the actual growth of the cold sore, the other symptons are still there with a vengance. 
Can anyone help me?  i was so pleased that I thought i had managed to supress this vile virus, and now here it is, back again with a vengance and I cannot bear it.
I would be so grateful if anyone has any ideas.
Thanks
Sarah

[RD]

... when I have them with all the nerve endings on the side of the face affected into my teeth and even into my head where i cannot bear to touch my face or hair.

That sounds like trigeminal neuralgia, if a consequence of herpes virus then postherpetic neuralgia.

Anticonvulsant medication is used to treat the neuralgia ... http://en.wikipedia.org/wiki/Postherpetic_Neuralgia#Treatment, (but it doesn't stop the virus).


http://en.wikipedia.org/wiki/Herpes_simplex

http://en.wikipedia.org/wiki/Herpes_zoster

[hemyinspain (OP)]

Hi
Thank you for your reply.  Is that the sort of medication that needs to be taken all the time or just during attacks?  I seem to remember years ago that my gp had me on some very mild anti convulsant medication but I cannot remember what it was for.
I have so many other medical problems, the main one being from spinal surgery in my lower back that went wrong in sept 2007 leading to huge CSF leaks, coma, repair of Leak area, meningitis, repair bust open again, another huge csf leak, another coma, another repair operation and I am now left with severe constant headaches, all day every day, and severe back pains with pains down my legs due to trapped nerves in my lower spine either by two new protrusions or by scar tissue.  Either way, I have undergone a lot of tests In London and they have decided that I have chronic migraine, I dispute this but I need to be off all medications to disprove that these headaches arent overuse of medication headaches.  I still believe I have a leak but that is another thing.
So, my question would be, if I do have a neuralgia pain, how would I know and would the doctor be able to do something about it without affecting my severe headaches?
Sorry for so  many questions, im getting pretty desperate being so constantly poorly and in pain.
Thanks
sarah

[RD]

... if I do have a neuralgia pain, how would I know ...

[Trigeminal neuralgia] pain may be felt in the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, and/or jaw and side of the face

The disorder is characterized by episodes of intense facial pain that last from a few seconds to several minutes or hours. The episodes of intense pain may occur paroxysmally. To describe the pain sensation, patients may describe a trigger area on the face so sensitive that touching or even air currents can trigger an episode; however, in many patients the pain is generated spontaneously without any apparent stimulation. It affects lifestyle as it can be triggered by common activities such as eating, talking, shaving and brushing teeth [and combing hair]. Wind, high pitched sounds, loud noises such as concerts or crowds, chewing, and talking can aggravate the condition in many patients. The attacks are said by those affected to feel like stabbing electric shocks, burning, pressing, crushing, exploding or shooting pain that becomes intractable.

There is also a variant of trigeminal neuralgia called atypical trigeminal neuralgia. This variant is also called "trigeminal neuralgia, type 2", based on a recent classification of facial pain. In some cases of atypical trigeminal neuralgia the sufferer experiences a severe, relentless underlying pain similar to a migraine in addition to the stabbing shock-like pains. In other cases, the pain is stabbing and intense but may feel like burning or prickling, rather than a shock. Sometimes the pain is a combination of shock-like sensations, migraine-like pain and burning or prickling pain. It can also manifest as an unrelenting, a boring piercing pain.

http://en.wikipedia.org/wiki/Trigeminal_neuralgia

The anticonvulsant medication (e.g. Carbamazepine, aka Tegretol ) used to treat trigeminal neuralgia is taken continuously, the dose is slowly increased over weeks until symptoms are controlled or maximum dose is reached. If it is necessary to stop this medication the dose should be tapered off slowly, not suddenly stopped. Anticonvulsant medication is only available from your doctor: not available “over the counter“.

[hemyinspain (OP)]

Thank you so much for that information.   I do remember now, many moons ago that I used to take tegratol.  Now Im wondering if I should take it again.  I hate taking tablets and already feel as if I rattle endlessly although I have had to stop my pain meds for 2 months to see if my headaches are medication overuse (which Im sure they are not) Im not sure if the tegratol would actually help my permanent headaches or make them worse.  All stuff to take to my doctors and discuss with him as after only 1 week I have realised that i do not know how I will go through 2 months with nothing to help my pain in my head and also back and legs.
Certainly it would seem that I do have neuralgia along with my cold sores.  For example today the neuralgia on right side of the face/head was starting to die down a bit and the valtrex had definately caught the cold sore in my mouth developing, however now, this evening, it is flaring up again on the left side of my face on my lower and upper lip.  So tonight ill double up the valtrex and the maintenance dose of acyclovir.  I dont seem to be able to win.  I did think i should ask my doctor for a blood test to see if my immune system is up to scratch but do not want to go in there and sound like a neurotic hypocondriac.  I have such a shopping list for him already with all my other problems lol

[RD]

I do remember now, many moons ago that I used to take tegratol.  Now Im wondering if I should take it again.

If Tegretol was stopped because it wasn't working or unacceptable side-effects, there are other medications ...
http://en.wikipedia.org/wiki/Trigeminal_neuralgia#Medications
http://www.nhs.uk/Conditions/postherpetic-neuralgia/Pages/Treatment.aspx

NB: The neuralgia caused by herpes virus can persist for months/years afterwards, i.e. the pain could occur even when the virus is not active because of the damage done to the nerve in past flares.

[hemyinspain (OP)]

Thank you, Ill update when Ive seen the doctor  thanks again so much

[Farcanal]

I have had recurrent severe cold sores for years, they come one after the other in various places on my face, inside my nose both sides, in my eyes, and ears, and I feel very very ill when I have them with all the nerve endings on the side of the face affected into my teeth and even into my head where i cannot bear to touch my face or hair.
I get a temperature, and swollen glands.
A year or so ago my GP put me on a maintenance dose of Acyclovir 400mg ever day.  I have to say that for a year i did not have a single outbreak.  then I did have an outbreak, no where near as bad as the previous ones and zapped it with Valtrex 500mg 5 times a day (double dosed in the first instance)
However I now have had three outbreaks one on top of the other despite the valtrex and acylovir.  going on now for 6 weeks almost.  I am not sure if they have been started because I had ICP Bolt pressure monitoring carried out at the beginning of November.  Does anyone think this could be the cause of this very long outbreak? (This involved screwing a bolt into my skull and through to the meningies and brain with a cable left in place for a week to measure liquid levels surrounding my brain as I suffer chronic severe headaches every day and they were trying to see if I had low CSF pressure)
This particular time it is inside my top lip my nostril and left eye and whilst the valtrex stops the actual growth of the cold sore, the other symptons are still there with a vengance. 
Can anyone help me?  i was so pleased that I thought i had managed to supress this vile virus, and now here it is, back again with a vengance and I cannot bear it.
I would be so grateful if anyone has any ideas.
Thanks
Sarah

What you're describing is Shingles not Cold Sores both are caused by the Herpes viruses. Shingles on one's face is problematic and can and does cause considerable malaise.

There are many antiviral creams that will help control the outbreaks, but the best is to avoid stress as much as possible.

Shingles virus infects the Sclera, the covering along the nerve ganglions and hides in there where the Immune System can't attack it.

Also it is VERY important to get to your GP if you get an outbreak that affects your eyes as it can cause blindness.

[bohilus]

I have been diagnosed with herpes type 1 after having an outbreak. Found this online, Antiviral elixir oil from advert deleted and applied onto the affected area, they were gone within 2 weeks.

[truesun]

I just want to share that I also have had the issue of recurrent sores in my mouth, nose, ears and inside my head ... I dont know where, but I read a couple of years back that taking L-Lysine every day would help reduce the flares and shorten them. The instruction was 1000mg daily and 2000mg if you suspected a flare around the corner or if you ate anything with caffeine or had nuts, specially peanuts in any way (apparently peanuts trigger flares and for sure I have been able to confirm that myself). I found the L-Lysine in walmart, very cheap by the way and started inmediately using them. Since then, my flares cut down from having them every month to having a flare every 6-8 months. If I am under unusual stress or my defenses go down, I will have more flares but they are way shorter than the typical 3 week flare that I used to have. So hey, I hope this helps somebody out there cause these cold sores or shingles or whatever they are, are viciously evil. Also I recently walked into a walgreens and say they have a chicken pox vaccine offered. I wonder if that would also help since all these things belong to the same family... wish you guys, and me, the best!