Neuralgia
Dayzee911
I was wondering if you can help me with a few questions. There is a woman who
attends my support group who is having severe and constant neuralgia. It's
been going on for about 6 weeks (she was diagnosed by ELISA of HSV2 about a
year ago, confirmed two weeks ago by WB). She is having symptoms of neuralgia
in her thighs, feet and now even in her fingers and neck, below her ears (the
WB was negative for HSV1). She has an appointment scheduled with a neurologist
later this week. She is quite distraught by the pain, and also by the fear
that because of the constant neuralgia the virus might be constantly active,
and so it is severely hampering her sex life with her partner (who is aware of
her HSV status). Here are our questions:
1) Do these symptoms sound like normal neuralgia symptoms?
2) Is the virus active and able to be trasmitted during neuralgia?
3) If it is indeed neuralgia in her neck and feet, is the virus there as well?
4) Will suppressive therapy reduce neuralgia? (she just started on Valtrex two
days ago suppressively)
5) What are some treatments for neuralgia? The pain is really getting her
down. She was in tears during most of our phone conversation this evening.
Thank you for any assistance you can offer with these questions.
Take care,
Mindy
DTWILKEN
I can talk to my experience with neuralgia. I was diagnosed by elisa a few
months ago. I have not taken WB yet, but I am basically certain of outcome. I
have never had a classical lesion of any kind, and would be interested to know
about your friend in this regard.
I have had constand symptoms for the past 6 months. Mostly burning in my
buttocks, thighs are tingly and feel like cold water is being splashed on them,
achy like. Perianal region burns all the time, but doesn't hurt to touch.
Lower back burns, sometimes spreads upward. Last week i got majorly stressed,
and i felt the same symptoms i feel in my thighs in my lower arms. I am
beginning to believe that the virus either affects these nerves or the simple
transference of pain (nerves talk to each other) is enough to cause symptoms.
My experience has been that suppressives do not help these symptoms at all. I
have read that perhaps they make them worse. I took a break off of
suppressives for 3 day...my nerve symptoms got better...but then i had 'skin"
problems in perianal (rawness) which i am thinking may have been a break out.
After the 3 days, i started back on suppressives at a lower dose. Nerve
symptoms are back, but not quite as bad for now, anyway.
I will give you the patent answer...you have to consider virus "active" all the
time....i don't like this answer, but who the hell can tell with all this other
stuff going on? I feel like typhoid mary. BUT....my partner has never had
symptoms at all.
This is more than a skin disease...this has serious nerve implications for many
of us. We can only hope it goes away. I find that alcohol relieves my
symptoms, or at least I don't care as much. Also hydrocodone (don't mix). I
have tried Neurontin as well as low dose antidepressants, neither worked. i am
hoping time will ease the pain. I feel worse as the day goes on, especially
after sitting more than a couple of hours...burn baby burn. It is hard to enjoy
life, but we must.
If your friend has e-mail, please give her my address. I would like to speak
with her.
april r deFord
to have you in her corner, though...I've had a lot of the stuff you
describe, although not as bad, and not as constantly. I also had a gf who
suffered *horrible* pain, *constantly* I'll give you the best answers I
can for her, and do let her know that we are all pulling for her in here.
On 27 Apr 1999, Dayzee911 wrote:
> Hi all,
>
> I was wondering if you can help me with a few questions. There is a woman who
> attends my support group who is having severe and constant neuralgia. It's
> been going on for about 6 weeks (she was diagnosed by ELISA of HSV2 about a
> year ago, confirmed two weeks ago by WB). She is having symptoms of neuralgia
> in her thighs, feet and now even in her fingers and neck, below her ears (the
> WB was negative for HSV1).
But she may have oral HSV2, which could explain the neck and other
upper-body pain. But I've had s**t like that. Not as bad as she's having,
but bad. BTW, what is she taking for the pain?
She has an appointment scheduled with a neurologist
> later this week. She is quite distraught by the pain, and also by the fear
> that because of the constant neuralgia the virus might be constantly acive,
>
I have to say that that is probably true. I'm really sorry to, but it
probably is.
and so it is severely hampering her sex life with her partner (who is aware of
> her HSV status). Here are our questions:
>
> 1) Do these symptoms sound like normal neuralgia symptoms?
>
"Normal" is not a good word in this context...but while it's not what I
usually hear about, it isn't that 8abnormal*, expecially if she's in her
primary, which I think is likely.
> 2) Is the virus active and able to be trasmitted during neuralgia?
>
Probably. Not definitely.
> 3) If it is indeed neuralgia in her neck and feet, is the virus there as well?
>
No; at least, as I understand the workings of this lively little bug, the
virus is in her spine, and is affecting nerves that make her feel pain,
but it isn't where the pain itself is.
> 4) Will suppressive therapy reduce neuralgia? (she just started on Valtrex two
> days ago suppressively)
>
It did for me, and, more to the point, it really relieved the neuralgia of
a friend of mine who was in *constant* agony for two years. Zovirax didn't
help, neither did Valtrex, but Famvir did. She went on suppression and her
pain completely went away. All the the aforemetnetioned drugs really
helped me, too; one was more effective than the other, ranging from
Zovirax to Valtrex to Famvir. I rarely get appreciable pain because of
Famvir.
> 5) What are some treatments for neuralgia? The pain is really getting her
> down. She was in tears during most of our phone conversation this evening.
>
Well, I recommend Ibuprofin. It helped me- but not my friend who had the
Killer Neuralgia from Hell. What helped her *and* me was accupunture. She
felt a differentce after the very first session. She told me it was the
only thing that helped, including ibuprofin.
Another thing to try in the over-the-counter variety might be that new
Ezcedrin that's advertised as being strong enough for migraines. Since
neuralgia involves the Central Nervous System, and, therefore, involves
the brain, I would think that a drug which can relieve pain which is
entirely neurological in origin (migraines are caused by wide and sudden
fluctuations in seratonin levels in the brain, which cause the blood
vessles in the meningis to go into spasm, causing pain) could relieve, or
at least reduce, neuralgia. Have your friend check with her druggist; I'm
sure the druggist will know what I'm talking about. And there's a new form
of aspirin on the market that, I would think, would also be good, or at
least worth a try.
That's it for now, Mindy. If I think of anything else, I'll be sure to
let you knwo. Please send your friend my best- the best from all of us
here. We'll all be keeping a good thught.
> Thank you for any assistance you can offer with these questions.
>
> Take care,
> Mindy
HUG, April
>
>
gloria
I was wondering if you can tell me what neuralgia actually is? My sister
has herpes and she gets all kinds of pains all over her body. She is
practically asymptomatic (gets outbreaks about once a year) and she's
not very receptive when I mention to her her symptooms might be from
HSV. She has been misdiagnosed at various times with lupis, MS, brain
tumors, pre-menopause, etc., etc..and she is still going through tests
for pains in her legs, back, head...she tells me she is almost in
constant pain.
Thanks.
Gloria
_____________
Hi all,
I was wondering if you can help me with a few questions. There is a
woman who attends my support group who is having severe and constant
neuralgia. It's been going on for about 6 weeks (she was diagnosed by
ELISA of HSV2 about a year ago, confirmed two weeks ago by WB). She is
having symptoms of neuralgia in her thighs, feet and now even in her
fingers and neck, below her ears (the WB was negative for HSV1). She has
an appointment scheduled with a neurologist later this week. She is
quite distraught by the pain, and also by the fear that because of the
constant neuralgia the virus might be constantly active, and so it is
severely hampering her sex life with her partner (who is aware of her
HSV status). Here are our questions:
1) Do these symptoms sound like normal neuralgia symptoms?
2) Is the virus active and able to be trasmitted during neuralgia?
3) If it is indeed neuralgia in her neck and feet, is the virus there as
well?
4) Will suppressive therapy reduce neuralgia? (she just started on
Valtrex two days ago suppressively)
5) What are some treatments for neuralgia? The pain is really getting
her down. She was in tears during most of our phone conversation this
evening.
Thank you for any assistance you can offer with these questions.
Take care,
Mindy
Ron
Discussion raises more questions
3/1/99
I noticed the question from Dr. Joel regarding the use of nerve blocks for
the acute phase of herpes zoster. As an anesthesiologist, it has always been
my understanding that this is the cadillac treatment for the acute pain,
combined of course with antiviral agents, tricyclics, possible
corticosteroids, etc., and that early use of nerve blocks is supposed to
decrease incidence of post-herpetic neuralgia. Unfortunately, I have treated
my 69-year-old mother with a severe case of shingles in the C2 dermatome
with all of the above and am seeing poor relief of her symptoms. I had her
referred to the pain clinic for nerve blocks within 72 hours of the
appearance of the rash, but she is now 5+ weeks post onset and still has
severe pain. She may try acupuncture soon as an alternative therapeutic
treatment but I am not that familiar with the success rate for this
treatment. Even though her results have been disappointing, I would still
refer nerve blocks to any patient who is in the early stages of the
infection as it will provide at least temporary relief that is superior to
most oral analgesics. Perhaps the success of these in relieving symptoms in
the acute phase as well as minimizing post-herpetic neuralgia depends on the
location of the dermatome or other factors that have not yet been
identified.
J. Boyle, MD
----------------------------------------------------------------------------
----
2/24/99
I understand the literature supports the use of somatic and or sympathetic
nerve blocks in the treatment of herpes zoster. These treatments should be
used early in the course of the disease to accelerate healing of the lesions
and prevent the onset of post-herpetic neuralgia. What is your understanding
of the use of this treatment and have you ever used it?
Kenneth Joel, MD
----------------------------------------------------------------------------
----
5/19/98
Is there any experience in or data on the use of acupuncture in the
management of postherpetic neuralgia?
Michelle Cresp
Chris Jackson
Chilipepper
diagnosis. There were times when the skin on the upper thigh and on
the buttocks was so sensitive that the material from clothing brushing
against it hurt. My right hip joint ached terribly and the pain shot
down to the ankle and foot. I never experienced any pain above the
waist but have spoken to a woman in H-chat that has had that kind of
pain with her genital herpes.
Fortunately, as the years have gone by, 10 yrs now, the neuralgia is
not as painful. I also was put on Valtrex for suppression and I'm
pleased that it's working so well for me. A decade is a long time to
suffer. :(
I believe it's possible for the virus to be active all the time. I
know mine was!
Will be interesting to hear what the neurologist has to say about
Mindy's friend. I hope she reports back and lets us know.
--
Posted via Talkway - http://www.talkway.com
Exchange ideas on practically anything (tm).
MARYGMARY
It is kind of you to share this knowledge with us. I also have a great deal of
pain in my left shoulder and lower back but always attribute it to the work I
do. It's nice to know there are alternatives if the tough get going and
can't......a way out....I wonder what will happen with this as I get older and
have less tolerance....What are the names of the nerve blocks you recommend or
specifics?????
Thank You,
Mary
Dayzee911
Thank you for your reply, and I will pass your email address on to her. She
does have email, and would love to correspond with someone who is going through
something similar.
Regarding your not having classic lesions, she has had them, and I believe she
said she gets them about every 6 months.
She's a little worried about suppression making the neuralgia worse, as I've
heard that before too. However, I've also heard from several people that it
was the only thing that helped, so there's hope. She's open for just about
anything. I think I will suggest famvir to her, as that is what most of those
who had success on suppression were taking.
Thank you again for your reply,
Mindy in Colorado
Dayzee911
that I'm eager to share with my friend. She is in such need of answers right
now, and I think we're giving her the college try.
I appreciate being able to come to this forum to share knowledge and gain
knowledge. You guys are the best!
Mindy in Colorado
Pauly
At this site, I wrote HERPETIC NEURALGIA to get the following answers.
http://igm.nlm.nih.gov (pubmed)
Some seem appropriate.
Citations 1 to 9 of 9 from MEDLINE
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TITLE: Acute herpetic neuralgia and postherpetic neuralgia in the
head and neck: response to gabapentin in five cases.
AUTHORS: Filadora VA 2nd, et al.
SOURCE: Reg Anesth Pain Med. 1999 Mar-Apr;24(2):170-4.
[MEDLINE record in process]
CIT. IDS: PMID: 10204905 UI: 99219599
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TITLE: Skin and plasma levels of acetylsalicylic acid: a comparison
between topical aspirin/diethyl ether mixture and oral aspirin in
acute herpes zoster and postherpetic neuralgia.
AUTHORS: Bareggi SR, et al.
SOURCE: Eur J Clin Pharmacol. 1998 May;54(3):231-5.
CIT. IDS: PMID: 9681665 UI: 98344990
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TITLE: Post herpetic neuralgia: a review.
AUTHORS: Griffin MJ, et al.
SOURCE: Ir J Med Sci. 1998 Apr-Jun;167(2):74-8. Review. No abstract
available.
CIT. IDS: PMID: 9638018 UI: 98301865
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TITLE: The use of capsaicin in herpes zoster ophthalmicus neuralgia.
AUTHORS: Frucht-Pery J, et al.
SOURCE: Acta Ophthalmol Scand. 1997 Jun;75(3):311-3.
CIT. IDS: PMID: 9253983 UI: 97395996
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TITLE: Lamotrigine for pain with hyperalgesia.
AUTHORS: Harbison J, et al.
SOURCE: Ir Med J. 1997 Mar;90(2):56.
CIT. IDS: PMID: 9105125 UI: 97258980
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TITLE: Topical aspirin/diethyl ether mixture versus indomethacin and
diclofenac/diethyl ether mixtures for acute herpetic neuralgia and
postherpetic neuralgia: a double-blind crossover placebo-controlled
study.
AUTHORS: De Benedittis G, et al.
SOURCE: Pain. 1996 Apr;65(1):45-51.
CIT. IDS: PMID: 8826489 UI: 96423889
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TITLE: Management issues in herpes zoster.
AUTHORS: Dwyer DE
SOURCE: Aust Fam Physician. 1996 Mar;25(3):299-307. Review.
CIT. IDS: PMID: 8867180 UI: 97020820
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TITLE: An alternate method for intercostal blockade for the
management of post herpetic neuralgia.
AUTHORS: Ackerman WE 3rd, et al.
SOURCE: J Ky Med Assoc. 1995 Feb;93(2):56-8. No abstract available.
CIT. IDS: PMID: 7884295 UI: 95190376
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TITLE: The Duke experience with the nucleus caudalis DREZ operation.
AUTHORS: Gorecki JP, et al.
SOURCE: Acta Neurochir Suppl (Wien). 1995;64:128-31.
CIT. IDS: PMID: 8748600 UI: 96356198
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