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trigeminal nerve shingles - what to do?

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Old 10-09-2005, 09:17 PM   #1
lukku cairi
Join Date: Sep 2005
Location: Utah
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lukku cairi HB User
trigeminal nerve shingles - what to do?


I'm female, 31.

Doc says I have shingles of the trigeminal nerve in my face. When I have outbreaks (pretty common, it's chronic) I get eruptions on my eyeball, on my tongue, and pain that can go all the way to the top of my scalp. I do not EVER get eruptions on my facial skin. This is not cold sores.

I do not have oral or genital herpes, nor have I ever been exposed to them that I know of. I've had Bell's Palsy three times, between the ages of 8 and 12. I'm 31 now and have not had a recurrence of BP since I was 12. I did not have chickenpox until I was 17. The ENT says this is weird, since BP usually comes from chickenpox, and my BP predates my only case of chickenpox by 5 years.

What virus is this, and how did I get it? Doc says it's "probably a zoster virus" but of course he doesn't know for sure. All I know is that if it's the same one that caused the BP, I've had it for over 20 years. I'm on acyclovir (zovirax) right now to control the outbreaks, but still have symptoms even on 400mg 3x daily. Doc put me on 800mg 2x daily to see if that would help, and it seems to have.

The issue is this: I would dearly like to get off the pills. This outbreak has been chronic ever since my father died in 2004 (stress?) and has continued right through my recent tonsillectomy. I would like to have kids before I'm 35, but I'm afraid that I won't be able to rely on antivirals while pregnant, and that the hormone surges will really entrench the chronic nature of the outbreak I'm having.

I guess my question is, is there anyone else out there who has had a similar case of shingles of the facial nerve, and especially, is there anyone who knows of anything I can DO to get the darn stuff to go away? I'm doing what I can with pills, trying to get my stress level down, exercising, eating right, and I had my festering tonsils removed 19 days ago, so hopefully all that should help. I really don't want to have this for the rest of my life, and I ESPECIALLY don't want to develop trigeminal neuralgia, which I've heard is really the pits.

Can anyone help?


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Old 10-22-2005, 06:19 PM   #2
Join Date: Jul 2005
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notpain HB User
Re: trigeminal nerve shingles - what to do?

It's my understanding you carry these viruses your entire life once you have them. There are two treatments worth considering:

1. Ultra Violet Light Treatment. The doctor (well usually nurse) will pull 60cc's of blood out of you and through a machine which irradiates the blood with ultra violet light. The light kills all the bacteria and virus that passes through it. The blood is then pushed back into you and your body has to excrete the dead material. They actually do this TWICE in one session - 120 cc's total. There is a limit to how many times they can do this. I have had this done and it is not entirely unpleasant.

2. You can take Collidal Silver. This may or may not be controversial but it requires administration directly into the blood to work best (IV). Silver in concentrations as low as 5 to 6ppm (parts per million) has been shown to kill all viruses in vitro (outside the body in test test situations).

The goal of these two treatments is NOT to kill all the virus but to get the levels down to the point where your body can prevent outbreaks. Meaning keep things in check.

Most people carry viruses - CMV, EBV, Various Herpes Viruses, etc. However as long our immune systems keep things in check we don't have to suffer many outbreaks. Viruses are opportunistic and as our health diminishes from other diseases the viruses jump to life. Do everything you can to fix your overall health and it will help you have less outbreaks.

And if you have not done so it's time to find someone (Neurologist, Neurosurgeon, etc.) who specializes in trimengal nerve problems. Doctors do not always make the correct diagnosis and it sounds a bit to me from what you wrote that the doctors and not entirely sure what is causeing your problem. I had an ENT tell prescribe me Biaxin (A broad spectrum anti-biotic) for sinus problems. I asked him what it would do if it turned out my sinus problems were fungal and not bacterial. He said the fungus would get worse. GREAT! So he made an "educated guess" that my problem was bacterial. So is the the best way to treat a condition - take a guess and prescribe a medication and hope it is the right choice?

Old 10-23-2005, 07:02 AM   #3
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Re: trigeminal nerve shingles - what to do?

I totally agree with NP,you definitely ned to seek out a good NS.If you happen to live near any sort of a university teaching hosp this would really be a good place to start,for alot of reasons.This is where i ended up while seeking opinions on a very bizarre vascular formation that was inside of my sp cord.They are just more 'up" on all the latest stuff and have many other speacialists to consult with.this is where I really got the best treatment along with all of the answers to questions about this glob inside of my cord that the two previous neurosurgeons did not have the answers to. this definitely does not sound like a 'normal" presentation of shingles at all.And the fact that these blisters do not actually appear on your face despite the way that the trigeminal actually runs,is really strange.this could also be from the bells palsy you had way back when.Sometimes(believe me this is happening to me)when you have had anything that has affected your nerves or nervous system in any way,and something else comes along that also will affect those same nerves in some way,what results is some bizarre godawful sort of 'mutation" of all of this stuff that presents with a little bit of this and a little bit of know what I mean?i have many areas of my body that are affected in this way because of all the various nerves,tracts and my SNS that were damaged.each individual area has it's own particular way of actually 'showing' the damage and when you combine one or more of those things all together,well, my my we have created some really lovely pain syndromes and very bizarre neuro symptoms.This could be a possibility for you as well.
This just does not appear to be the classic type of shingles that you keep having,it does sound more like an actual 'mutation" of more than one thing.Do you know what I am trying to say?You really do need a really good neurosurgeon,and not really a neurologist here.i have had to see many neurologists and NSs over the years for all of my ongoing crap and really, I honestly think and strongly feel that a good NS beats any good neurologist any day in my book.i just think that since they actually go inside of these areas they really do have a much deeper understanding of anything neuro,you know?i really do wish you lots of luck here in defining the biggest triggers and then be able to treat them properly.what you are dealing with here has just got to really suck.I do know how you feel.Hang in there and please keep me posted,K?marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

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