Hi Tricia. My name is Kenna and I'm nineteen years old. I initially got the
shingles when I was 17 and I'm still in horrrrible pain. I just wanted to let
you know that I'm legalized for Medical Marijuana and if you have any questions,
just ask.


Tricia <my3monsters@...> wrote:
           As some of you all know, I came down with shingles early spring of
2005 just before Mother's Day and subsequently ended up spending three weeks in
hospital because the pain was so intense the doctors needed to get my pain under
control before sending me home. I have quite literally been on every cocktail of
medications that have been mentioned in this forum. Unfortunately for me, I have
a very high tolerance to pain medications and it is difficult to find the right
combination or type of pain killer that will have any kind of positive effect.
The pain as you all know is mind blowing and for me atleast, has been over
powering my quality of life. The pain, burn, itch, irritation is just to much
for me to manage and I have a very difficult time keeping myself from picking or
scratching at the sores caused from the shingles. Since 2005 I have not at all
healed completely from the scabs and sores. The area affected was the top 1/2 of
my scalp, the entire right side of
  my forehead and down just bellow the eye. Thankfully, I did not loose my
eyesight but I did loose the eyebrow and my hair line is higher in the right
side. As well the entire right forehead is more pale then the left. Last year in
May/June, I finally saw a doctor at a pain clinic who started me on lidocaine
infusion treatments to be given once every three weeks as well as for pain
medication I am now on the liquid form of methadone. Things since then had been
going well and I was pretty much pain free except for the occasional itch and
burn but nothing at all like it used to be...

Now here I sit, almost in tears because luck ran out. I am not sure what
situation in my life triggered this recent flare up but the pain and burn as
well as that intense itch is back. I am really quite upset because since June of
last year things were going well enough that I have started getting on with life
again. I started going out to the shops and stores, started going back to
church.. and not at all too concerned with what my head looked like, although, I
am still self conscious of the obvious sores and lack of eyebrow on my face. I
am again feeling quite tired and depressed. I have been under treatment for
depression for years but recently was switched to a different medication because
the depression had gotten a bit worse. Last week I saw one of my pain doctors
about this new change. The doctor has increased my methadone now to 15mls 3xs a
day as well, prescribed me some sort of "compound" a topical medication that is
supposed to help with the nerve pain. I have
  not found it yet to be very effective but I have only been using it a week. I
hope it works as it is quite an expensive compound at $60.00 for a small 'jar'
As well, my lidocaine infusion has been upped. I was very surprised to find this
out, just today infact, because when I was in his office last week and he called
the hospital pharmacy, it seemed for my height and weight I was already at a
maximum dose. I can only assume that he recalculated things to see what could be
done. I only got the call from the hospital today and I go for my next infusion
on Friday. Usually the process takes 6 to 7 hours. The little "unit" that
contains the drug to be infused is portable so I am not stuck at the hospital
all day, I just get hooked up and go home. The infusion this time will be a bit
longer but if it works, I will be happy.

I am curious to know though, if anyone who still suffers from open sores and
scabs, do you take any extra supplements to help encourage or increase the
healing abilities of your body?? I do not take supplements faithfully as I just
am not to sure of its effectiveness. I recently started taking 1000mgs of
vitamin C, vitamin B12, Omega 3-6-9, Flax Seed Oil, and Zinc. If anyone else
takes extra supplements, have you noticed any difference at all in how you
generally feel in regards to shingles and/or phn ?? I am hoping that the zinc
and vitamin C will help me heal faster and maybe more effectively. I have also
heard that the B vitamins are great for nerve pain and damage. I would really
appreciate any feed back on different supplements you may have to suggest to
help the healing process .. and maybe even reduce the pain a more natural way. I
worry that the methadone is not at all as effective as it was in the beginning
and as we (my doctors) have exhausted all possible
  'conventional' pain control medications, we may need to look into something a
little more unconventional, which, because I have been suffering for so long,
would be more then willing to try.. but for that I would want more feed back as
well. Here in British Columbia, they have legalised marijuana (sp) for pain
management and have actually produced the active ingredient that suppresses the
pain in a "spray" form. Much like an inhaler in a way, it is sprayed in the
inside of the mouth, usually the inner cheek or under the tongue. Back in June I
had looked it up and read some about it but I have not known anyone using this
legalised method for pain management so I am unsure how effective even this will
be if everything else has failed. Over all, I am beyond frustrated and if anyone
has any positive pieces of advice to share, I sure would love to hear from you.

Thanks !

Tricia

Come Join Me Here::

Euphoria and an Espresso
Where Eagles Soar
Canuck Pride Rocks
Chronic Illness Bites



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---------------------------------
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Access, No Cost.

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hi! welcome to the list!

the shingles rash is the external manisfestation of the shingles virus
being active in the body... once the rash is gone, there are still
after-effects such as fatigue, etc.

it can take weeks/months to recover fully from a shingles outbreak,
depending on one's immune system, stressors & general state of health...

overdoing things too soon too fast can delay recovery considerably --
going back to work too soon, trying to do too much in general & getting
tired or overtired...

sleep & rest are your best friends right now... as much as is possible
or practical...

this disease is different for everyone -- how long it will take YOU to
recover depends on your personal situation... talk with your personal
physician about your ongoing symptoms -- there may be something he/she
can recommend for you to help...

I'm sorry there's not anything much better to say... it's a rotten
disease overall!

Debz

Shingles-PHN@yahoogroups.com wrote:
> 1. Trying to learn
>     Posted by: "haleyacres" haleyacres@... haleyacres
>     Date: Tue Mar 25, 2008 5:46 am ((PDT))
>
> Hi,I've had shingles for 5 weeks. The rash is mostly better but I feel
> like I've lost myself. I have no energy, can't sleep, am moody most of
> the time, run a slight fever, suffer from nausea and just generally
> feel like crap. I thought shingles was just about the rash, was I
> wrong? Any info will be appreciated.
>

Hi,I've had shingles for 5 weeks. The rash is mostly better but I feel
like I've lost myself. I have no energy, can't sleep, am moody most of
the time, run a slight fever, suffer from nausea and just generally
feel like crap. I thought shingles was just about the rash, was I
wrong? Any info will be appreciated.

Michele,

I can answer some of your questions as they relate to stuff i have
dealth with but i am sure there are others who can answer more.

Firstly the Lyrica, I did find it worked and was at my worst on 300mg
a day (100mg 3x a day) apparently you can safely take upto 1500mg a
day so you have room to increase on that - I took neurontin as first
but it did nothing the lyrica was a huge help but it did turn me into
something of a zombie! It does take time for the lyrica to work but
if you have been taking it for a while as about increasing the dose
it cant hurt.

Secondly with regards to the anti-depressent paxil I also was on that
during the early days of PHN - altho it was for post-partum
depression, if I hadnt taken myself off it the neurologist was going
to switch me to something like cymbalta because paxil does not help
with PHN pain but some other anti-depressents also help with the PHN.
Speak to your dr to see if you can switch to something that will help
both. I was also prescribed Atarax to prevent the itching which also
worked.

I am currently off all of my meds - aside from percocet every now and
then when the pain gets too much and I take the B complex vitamins to
help with the nerve pain. I also do a LOT of exercise - believe it or
not that has really helped my recovery, after I have worked out I
find that I am pain free for most of the day and only have some
issues at night when i take a percocet and sometime benadryl to stop
the itching!

It does take a while to get the meds right and everyone reacts
differently, I myself am 35 with 4 children 4 and under so I needed
to reclaim my body in order to keep up with the kids and aside from
the fact that I am undergoing a cornea transplant in 2 weeks (I had
shingles in my left eye, left side of forehead and left part of my
scalp - apparently thats considered quite bad!) things are looking
up. I still have pain - it can be excrutiating but I know that I am
lucky compared to some people on this board who have suffered
terribly with this. I can only write about my experience but I have
become a big advocater of recovery through exercise - whatever you
can do - it truly does help - even if its swimming 20mins a day that
can help. It has also helped with my depression and I have lost 20
lbs to boot!!

Good luck and wishing you a pain free existence

Deborah

welcome to our list! (I am responding privately as well as on list...)
there may be more replies in the pipeline and the list owner/moderator
will be approving them very soon... <smile> this list is fully moderated...

I'll try to answer a few of your questions -- some I have no clue
about... <smile>

1) will the shingles recur? it is possible, but not probable... some on
this list have had recurring bouts for years; some have not (like me)...
it all depends on your personal situation -- health, stress, etc., which
all play into the equation... the healthier, less stress, the better
overall...

2) will the pain get worse? who knows? again, this is very individual...
the doctor is correct in saying the shingles is IN the nerve itself...
it's the NERVE that is damaged... and nerves take a long long while to
heal, if at all... for some, the pain never goes away & there's not much
that helps... for others, the pain eventually lessens (like me) or even
goes away... or one or more drugs/treatments help (like me)...

what you may have noticed is that people try just about every/anything
to see what works for them... many drugs will have side effects -- such
as mind numbing, sleepiness/grogginess, inability to think/function to
some greater/lesser degree... the best thing is to try something for
several weeks or months to see if it works or not... if not, try
something else...

3) about taking Lyrica & interaction with other antidepressants -- I
don't have a clue... ask a pharmacist? same answer re how long should it
take to have effect...

myself, I take low dose gabapentin/Neurontin and am managed quite well
on that... but I did take Darvocet, Ultracet, and the lidocaine patches
-- all to no real effect as the pain could break through at any time...
I was using high dose gabapentin early on, but didn't like the mental
fog & sleepiness (couldn't work), so started taking less & less over
time... I also take a high-dose B complex vitamin supplement as well as
an additional high dose B12 (1000 mcg timed release) on the theory that
the B vitamins help the nerves to heal... did/do the B vitamins help? I
can't say for certain, but it's something I can do for myself...

4) is it too early to tell if you truly have PHN or not? usually if you
start taking the antiviral ASAP on diagnosis (there is a short window),
the chances for PHN developing are lessened considerably... but it's not
an exact science either... it's now Mar. 22, 3 weeks after initial onset
of your rash... the rash should be healing by now & the rash pain (the
herpes outbreak) lessening... if the pain is not lessening and appears
to be continuing after the rash is all healed and as more time passes,
then it's probable you have PHN...

the thing with nerve pain like this is it doesn't show up on any scan or
test... it just IS... and because there is no definitive or accurate
measure/test, describing it is left to using the most colorful, strong
language to convey how bad it really is... this in a society/culture
scarred & scared by drug addictions, which makes everyone afraid to
treat adequately something not well understood... or it's confused with
drug addiction (i.e., NO pain could be that bad, so it must be ...) --
well you get the picture...

it really really helps to have a doctor who understands shingles pain &
PHN... many (most?) don't quite understand how bad it really is... same
for family/friends... however this affects you, having a strong
understanding care/support team is crucial in getting through it all...

sorry I can't be more helpful or upbeat... <sigh> you're in this for the
long haul now and this list IS quite supportive and understanding...
we've all been there, ARE there right now... it's a safe space to come &
share, vent about the pain, ask more questions -- everyone here has
their own unique experiences, what works for them, their knowledge and
they are willing to listen and share what they know...

again, welcome to the list!

Debz

Shingles-PHN@yahoogroups.com wrote:
> 1. A BUNCH of Newbie Questions?
>     Posted by: "ohmiahere" seachell2@... ohmiahere
>     Date: Fri Mar 21, 2008 7:51 pm ((PDT))
>
> Hi Everyone,
> I'm new to the group, thankfully I found you guys while searching for
> information on this mess LOL
>  I'm 55 as of yesterday:>) and got singles 3/1/2008. I had a couple
> of days with terrible pain in my chest and flu type symptoms. But I'm
> disabled and homebound from a verity of illness. So I thought I was
> just getting ready for a heck of asthma attach. When the pain
> worsened and to the point it was kinda scaring me so I had my
> daughter take me to the hospital. The ER nurse who admitted me was
> helping me change into a gown and saw the rash beginng under my
> breast and around my chest to the back. She ran a wash cloth lightly
> over the area and asked me if it tingled? And it did a little but was
> mostly numb at that point. When the lady said I had shingles I
> thought she had lost her mind.!! I was there for asthma and chest
> pain. Even when the DR came in I scoffed when I told him what she had
> said. He did the exam and did hear some rails in my lungs and a
> little congestion showed in the x-ray. So he had them give me a
> breathing treatment, said the rash wasn't anything probably a yeast
> infection. Then because the pain was so bad and I was having
> difficulty when I breathed he gave me some Demerol and phengren. I
> blissfully fell asleep for an hour or so and he sent me home with
> some predsone. I've been treated for asthma for years and the
> treatment he gave seems to be SOP. Of course by Sunday the rash had
> fully developed and the pain was coming in waves. I went to my PCP on
> Monday and he confirmed it. I was given valtrex, a steroid and some
> darvocet to take every 12 hours. I finished the 90 pain pills he gave
> me in 13 days the pain is so bad I went back yesterday and they gave
> me lyrica 75mg 2 times a day and said I could take the darvocet-N 100
> 4 times a day.He said it looks like I have PHN.
> The point is I'm in such pain it feels like a red hot branding iron
> one on each side at the surface and the itching and creepy crawls are
> more than I can stand. I've had chronic pain for more than two year
> in my back. And that's nothing compared to this!!! I try to tell my
> daughter who has been an angel through all of the last 12 years of
> disability and illness and she says I'm just thinking it hurt this
> bad so it does. You know she has never said that to me before. And I
> wonder if I am being a big baby? The blisters have gone so it really
> does not look bad. But I understand why people go off the deep end
> with this stuff!!
> So after reading a lot of post here and at other places I still have
> some questions that I hope you'll can help me with? I hear people say
> they have had several bouts? Will the rash itself come back?  Is it
> possible the pain will get worse? The doctor said the problem is that
> the virus is not next to the nerve but in the nerve. That the Lyrica
> will help but not right away. How long should I wait if I don't get
> any relief? I take busbar and paxil for my agoraphobia and depression
> already should I be taking another anti- depressant?  Can they tell
> this early that I have PHN? All my years in the health field I never
> knew how terrible this is.
> And lastly I like to thank each and every one of you for taking the
> time and effort to write these posts I got more information about the
> realities of this illness from you all than from anywhere else I've
> found. I thank you from the bottom of my heart,
> Michele
>
>

Poor you, it sounds like you have had a rough time of it.
First of all, shingles and the pain after shingles is a demon, so it isn't you. 
The pain is very, very real.
Secondly, it is early days for you - most people who have shingles have pain
after the rash has gone for a week or so, the illness also wipes you out as it
is your body's way of telling you that it just can't cope.  So you will feel
physically and emotionally fragile.
For PHN the rule of thumb is that if you have continued pain for a month after
the rash has disappeared, then you have PHN - this is the time when you usually
get put on an anti-epileptic like neurontin or lyrica as well as a tricyclic
anti-depressant and lidocaine patches can also help too.

In answer to your questions.
Some people do get recurrent shingles attacks, but that is usually because their
immune systems are severely compromised.  What you can do to avoid that is to
keep your system as strong as possible.  Eat well, exercise, you know the drill.
There are some supplements that can help you with a shingles attack and these
include taking l-lysine and B-Vitamins, as well as avoiding chocolate and nuts.

For the time being, rest is important and take care of yourself.  You aren't
being a big baby, the pain is real, but you caught it in time and got onto the
anti-virals which means that you have a good chance of not getting PHN.

As you don't have the rash any more, vigorously rub the affected area - either
with a towel or body brush.  This works on the principal that nerves can only
send one message and by rubbing the area or applying an irritant like the
capsacin cream, you are interrupting that message.  This is one thing that I
have found has helped.  Also, acupuncture works a treat, even if it is to calm
you down .  Oh and wearing tight clothes can cut down on that awful creepy
crawly feeling, some people even wrap themselves in cling film to provide even
pressure over the area.

There are lots of other things that you can do which I have put on
shingledout.com, but the best thing you can do is rest, try not to worry and
take care of yourself.  You have been on the anti-virals which means that you
caught the shingles attack in time.  You are also on lyrica which will work, but
you need to built up the dosage and if it doesn't, then try neurontin which is a
similar drug.  Don't worry, even if you do develop PHN, there are many
treatments, it is just a case of finding which one works for you.

I hope that you feel better soon
Nicola


----- Original Message ----
From: ohmiahere <seachell2@...>
To: Shingles-PHN@yahoogroups.com
Sent: Thursday, 20 March, 2008 9:24:30 PM
Subject: [Shingles-PHN] A BUNCH of Newbie Questions?

                 Hi Everyone,
I'm new to the group, thankfully I found you guys while searching for
information on this mess LOL
  I'm 55 as of yesterday:>) and got singles 3/1/2008. I had a couple
of days with terrible pain in my chest and flu type symptoms. But I'm
disabled and homebound from a verity of illness. So I thought I was
just getting ready for a heck of asthma attach. When the pain
worsened and to the point it was kinda scaring me so I had my
daughter take me to the hospital. The ER nurse who admitted me was
helping me change into a gown and saw the rash beginng under my
breast and around my chest to the back. She ran a wash cloth lightly
over the area and asked me if it tingled? And it did a little but was
mostly numb at that point. When the lady said I had shingles I
thought she had lost her mind.!! I was there for asthma and chest
pain. Even when the DR came in I scoffed when I told him what she had
said. He did the exam and did hear some rails in my lungs and a
little congestion showed in the x-ray. So he had them give me a
breathing treatment, said the rash wasn't anything probably a yeast
infection. Then because the pain was so bad and I was having
difficulty when I breathed he gave me some Demerol and phengren. I
blissfully fell asleep for an hour or so and he sent me home with
some predsone. I've been treated for asthma for years and the
treatment he gave seems to be SOP. Of course by Sunday the rash had
fully developed and the pain was coming in waves. I went to my PCP on
Monday and he confirmed it. I was given valtrex, a steroid and some
darvocet to take every 12 hours. I finished the 90 pain pills he gave
me in 13 days the pain is so bad I went back yesterday and they gave
me lyrica 75mg 2 times a day and said I could take the darvocet-N 100
4 times a day.He said it looks like I have PHN.
The point is I'm in such pain it feels like a red hot branding iron
one on each side at the surface and the itching and creepy crawls are
more than I can stand. I've had chronic pain for more than two year
in my back. And that's nothing compared to this!!! I try to tell my
daughter who has been an angel through all of the last 12 years of
disability and illness and she says I'm just thinking it hurt this
bad so it does. You know she has never said that to me before. And I
wonder if I am being a big baby? The blisters have gone so it really
does not look bad. But I understand why people go off the deep end
with this stuff!!
So after reading a lot of post here and at other places I still have
some questions that I hope you'll can help me with? I hear people say
they have had several bouts? Will the rash itself come back?  Is it
possible the pain will get worse? The doctor said the problem is that
the virus is not next to the nerve but in the nerve. That the Lyrica
will help but not right away. How long should I wait if I don't get
any relief? I take busbar and paxil for my agoraphobia and depression
already should I be taking another anti- depressant?  Can they tell
this early that I have PHN? All my years in the health field I never
knew how terrible this is.
And lastly I like to thank each and every one of you for taking the
time and effort to write these posts I got more information about the
realities of this illness from you all than from anywhere else I've
found. I thank you from the bottom of my heart,
Michele




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[Non-text portions of this message have been removed]

Hi Everyone,
I'm new to the group, thankfully I found you guys while searching for
information on this mess LOL
  I'm 55 as of yesterday:>) and got singles 3/1/2008. I had a couple
of days with terrible pain in my chest and flu type symptoms. But I'm
disabled and homebound from a verity of illness. So I thought I was
just getting ready for a heck of asthma attach. When the pain
worsened and to the point it was kinda scaring me so I had my
daughter take me to the hospital. The ER nurse who admitted me was
helping me change into a gown and saw the rash beginng under my
breast and around my chest to the back. She ran a wash cloth lightly
over the area and asked me if it tingled? And it did a little but was
mostly numb at that point. When the lady said I had shingles I
thought she had lost her mind.!! I was there for asthma and chest
pain. Even when the DR came in I scoffed when I told him what she had
said. He did the exam and did hear some rails in my lungs and a
little congestion showed in the x-ray. So he had them give me a
breathing treatment, said the rash wasn't anything probably a yeast
infection. Then because the pain was so bad and I was having
difficulty when I breathed he gave me some Demerol and phengren. I
blissfully fell asleep for an hour or so and he sent me home with
some predsone. I've been treated for asthma for years and the
treatment he gave seems to be SOP. Of course by Sunday the rash had
fully developed and the pain was coming in waves. I went to my PCP on
Monday and he confirmed it. I was given valtrex, a steroid and some
darvocet to take every 12 hours. I finished the 90 pain pills he gave
me in 13 days the pain is so bad I went back yesterday and they gave
me lyrica 75mg 2 times a day and said I could take the darvocet-N 100
4 times a day.He said it looks like I have PHN.
The point is I'm in such pain it feels like a red hot branding iron
one on each side at the surface and the itching and creepy crawls are
more than I can stand. I've had chronic pain for more than two year
in my back. And that's nothing compared to this!!! I try to tell my
daughter who has been an angel through all of the last 12 years of
disability and illness and she says I'm just thinking it hurt this
bad so it does. You know she has never said that to me before. And I
wonder if I am being a big baby? The blisters have gone so it really
does not look bad. But I understand why people go off the deep end
with this stuff!!
So after reading a lot of post here and at other places I still have
some questions that I hope you'll can help me with? I hear people say
they have had several bouts? Will the rash itself come back?  Is it
possible the pain will get worse? The doctor said the problem is that
the virus is not next to the nerve but in the nerve. That the Lyrica
will help but not right away. How long should I wait if I don't get
any relief? I take busbar and paxil for my agoraphobia and depression
already should I be taking another anti- depressant?  Can they tell
this early that I have PHN? All my years in the health field I never
knew how terrible this is.
And lastly I like to thank each and every one of you for taking the
time and effort to write these posts I got more information about the
realities of this illness from you all than from anywhere else I've
found. I thank you from the bottom of my heart,
Michele

G,
thank you SO MUCH for your insite. I forwarded your info to my mom (who
is taking care of my bro right now). We will try to do everything we
can.
I will include all of you in my prayers, esp that some research/cure is
found to help...

Mary

Dear Mary,

It took me 6 years under W to get approved for
disability. However:

1. Everyone gets turned down the first time for this
[shingles/PHN].

2. find a good Social Security Disability lawyer ASAP
[it is a specialized practice area w/separate atty
admissions] check with local disability orgs. The
earlier  you get one, the better the appeal hearing
will go.

2. make sure that you have letters & medical records,
labs, test results,+ any other documentation that make
his debilitation as upfront & visible as possible.
document memory losses (short & long term), changes in
behavior, etc. Also, dated photos of any skin lesions,
etc.


If you need more help just post  - also -
and/or email direct @ bagreisen@...

It does take a lot of work.
G


      
________________________________________________________________________________\
____
Never miss a thing.  Make Yahoo your home page.
http://www.yahoo.com/r/hs

Typing this for my bro-who has phn...he asks...

I applied and was initially turned down. Waiting for my hearing, so I
would appriciate any suggestions when I go before the ALJ.

Mary

Hi Tricia,
I have found that my stamina has been reduced, although saying that, I feel that
because I am coping with the pain all the time, that it takes a certain amount
out of me anyway.

The new tablets aren't agreeing with me at all.  I think that so much of how I
cope with the pain is down to how much I can use my mind.  To be put in a
position where the medication wipes out half my IQ points and I can't read and
remember what the story is, or do the most menial tasks is often more
distressing than the pain.  It is often when I don't feel productive, that I
start to descend into a depression.  Does anyone else feel like this?

This is why I was reducing the neurontin in the first place and I was feeling
the benefits, so it feels like this is a step back, especially it doesn't touch
the deep sickening pain which knocks me out, but the skin sensitivity which I
can cope with.

Saying that, I have found that I have turned a corner with this now.  At least I
know that there is something I can use, maybe periodically for relief when it is
bad, but is not the solution to the problem.  I am thinking of going back to
acupuncture.
Hope all is well
N
----- Original Message ----
From: Tricia <my3monsters@...>
To: Shingles-PHN@yahoogroups.com
Sent: Monday, 10 March, 2008 9:46:43 PM
Subject: Re: [Shingles-PHN] Pamelor (Nortriptyline)

                   Good day to you Nicola !

I hope that the change in your medication is successful in reducing your pain. 
Reducing medications can be a real trial on the body.  I have been on so many
different medications over the last 3 years, I have lost count.  I can say
though, that I have pretty much been on all of it, and all, in high doses. 
Being weened off of any of these meds can really put the body into a tail spin. 
I have been in withdrawl too and have delt with those gitters and jumpy
aggitated feelings.  Not fun at all.  Like a lot of people here, it is not fun
to be on these medications, but, just to stay saine, it is necessary.  I
sometimes feel like I am going to go crazy with all the meds I have been on and
have had to stop taking because they just did not work.  Everyone's body
chemestry is different and I have a hard time with medications just working. 
Right now, I just have learned to "deal" with the pain for the most part.  I am
now taking methadone for pain management,
  and just recently, my doctor has put me back onto Fentynl.  Just 25mcg patches
for the Fentynl which I think I will be asking him to increase to 50s since
sometimes the pain can hit me like a ton of bricks.  I am on 15mls of the
methadone every 8 hours and that I think just helps take the edge off.  The pain
has yet to completley go away.  I hope and pray that soon it will just
disappear.  I have been dealing with phn since I came down with Shingles back
Mothers Day 2005 !!  Gosh, what a way to remember Mother's Day !!??  Three weeks
in hospital, away from my babes.  At that time, my youngest was not even 2 years
old.

I have seen so many doctors over the last 3 years and have had so much blood
drawn, I find it hard to keep up with exactly WHAT in the world they are testing
me for.  I have no idea what CRP or ESRs are in blood and will have too 'google'
it and then ask my doctor about it.  I have recently seen a doctor of internal
medicine back the first week of January of this year.  I had a LOT of blood
drawn as I also am having issues with low iron.  I will have to ask him about
what you mentioned.

I am currious.  Question to all.  Since having Shingles and now PHN, what is
your energy levels like ??  Do you have a lot of stamina like you had before
shingles/phn ?  Or, have you experienced little or no change at all ??  I am SO
tired all the time.  I am certain a lot has to do with my iron issues, however,
I swear that I didnt have issues like this BEFORE shingles/phn.  Being tired all
the time is horrible.  All I want to do is nap and even when I do take a nap, I
do not wake feeling at all refreshed.  I wake feeling as tired or more tired
then I did before I laid down to rest.  Sure would like to know if I am not the
only one fighting fatigue because of this.

Cheers to all,

Tricia

[Non-text portions of this message have been removed]




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Rise to the challenge for Sport Relief with Yahoo! For Good

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[Non-text portions of this message have been removed]

Good day to you Nicola !

I hope that the change in your medication is successful in reducing your pain. 
Reducing medications can be a real trial on the body.  I have been on so many
different medications over the last 3 years, I have lost count.  I can say
though, that I have pretty much been on all of it, and all, in high doses. 
Being weened off of any of these meds can really put the body into a tail spin. 
I have been in withdrawl too and have delt with those gitters and jumpy
aggitated feelings.  Not fun at all.  Like a lot of people here, it is not fun
to be on these medications, but, just to stay saine, it is necessary.  I
sometimes feel like I am going to go crazy with all the meds I have been on and
have had to stop taking because they just did not work.  Everyone's body
chemestry is different and I have a hard time with medications just working. 
Right now, I just have learned to "deal" with the pain for the most part.  I am
now taking methadone for pain management, and just recently, my doctor has put
me back onto Fentynl.  Just 25mcg patches for the Fentynl which I think I will
be asking him to increase to 50s since sometimes the pain can hit me like a ton
of bricks.  I am on 15mls of the methadone every 8 hours and that I think just
helps take the edge off.  The pain has yet to completley go away.  I hope and
pray that soon it will just disappear.  I have been dealing with phn since I
came down with Shingles back Mothers Day 2005 !!  Gosh, what a way to remember
Mother's Day !!??  Three weeks in hospital, away from my babes.  At that time,
my youngest was not even 2 years old.

I have seen so many doctors over the last 3 years and have had so much blood
drawn, I find it hard to keep up with exactly WHAT in the world they are testing
me for.  I have no idea what CRP or ESRs are in blood and will have too 'google'
it and then ask my doctor about it.  I have recently seen a doctor of internal
medicine back the first week of January of this year.  I had a LOT of blood
drawn as I also am having issues with low iron.  I will have to ask him about
what you mentioned.

I am currious.  Question to all.  Since having Shingles and now PHN, what is
your energy levels like ??  Do you have a lot of stamina like you had before
shingles/phn ?  Or, have you experienced little or no change at all ??  I am SO
tired all the time.  I am certain a lot has to do with my iron issues, however,
I swear that I didnt have issues like this BEFORE shingles/phn.  Being tired all
the time is horrible.  All I want to do is nap and even when I do take a nap, I
do not wake feeling at all refreshed.  I wake feeling as tired or more tired
then I did before I laid down to rest.  Sure would like to know if I am not the
only one fighting fatigue because of this.

Cheers to all,

Tricia

[Non-text portions of this message have been removed]

Hi All
I have been trying to reduce my neurontin over the last 3 years and
came up against the tipping point at 1100mg.  Rather than accepting
that, I decided to push to get down to 900mg and have just spent a
hellish fortnight resulting in a constant headache and neckpain from
being so tense as well as a nauseating return to being a pain riddled
slug that had trouble breathing.  Last week I gave in and increased
the neurontin   - only to discover that I had increase it more than it
had been decreased before I got the same kind of pain relief.

I saw my GP today who suggested that I go on Elavil, which I refused,
and instead he said to try Pamelor at 10mg every night with the aim to
go up to 50mg.  I know that some people here with long-term PHN have
tried it, how has it worked for you?

I'm not brilliantly happy about going on another drug when I have been
trying to reduce them, but I realise that I need something to help me
stabilise everything (and also appear willing to try new treatments...).

Also, has anyone had an increase in their CRP and ESR levels in their
blood as a result of the PHN?
Thanks :)
Hope everyone is having a pain free day.
Nicola

hi!

that wasn't my mom or story -- it was Sharon responding to my post about
the shingles vaccine shot... <smile>

just to keep it all straight... LOL!

at least now I can say I've heard of *1* instance of off-label
prescribing...

Debz

Shingles-PHN@yahoogroups.com wrote:
> 1b. Re: Shingles Shot info
>     Posted by: "Joan Benedict" jb@... joanieben
>     Date: Tue Feb 26, 2008 4:42 pm ((PST))
>
> Debz:
>
> Your Mom shouldn't have been given the shingle shot.  Maybe the doctor was
trying to make her feel better by giving her a fake shot.
>
> Joan
>   ----- Original Message -----
>   From: Sharon Bruner
>   To: Shingles-PHN@yahoogroups.com
>   Sent: Monday, February 25, 2008 11:22 PM
>   Subject: Re: [Shingles-PHN] Re: Shingles Shot info
>
>
>   All,
>   My mom came down with a severe case of shingles in 2002 on her face and in
her eye. (She didn't loose the eye, but came close) She still has PHN and has
periods where she is miserable. We mostly do the hostilic treatments to help
her. Essential oils help her the best. My daughter makes up a mix for her. I've
emailed in to the group periodically and read the posts. I came down with a mild
case of shingles and got treatment immediatly so I'm fully recovered. My mom is
75 and in otherwise great health. At a checkup last week her regular physician
talked her into the Shingles vaccine. I was stunned when she told me. I told her
that it was impossible, that they don't do it on folks who have had Shingles but
she was insistant she got the vaccine and has the needle mark to show for it. We
live in Washington State. So there are doctors out there who will give you the
shot if you want it. Come to Washington!
>   Hugs to you all. Wishing you an easy night.
>   Sharon
>   ----- Original Message -----
>   From: Debz
>   To: Shingles-PHN@yahoogroups.com
>   Sent: Sunday, February 24, 2008 2:07 PM
>   Subject: [Shingles-PHN] Re: Shingles Shot info
>
>   1) genital herpes (Herpes Simples I) will not cause shingles... shingles
>   comes from the chicken pox virus which most of us had as a child...
>
>   2) if your mom has shingles now, she is not eligible for the shingles
>   vaccine...
>
>   3) shingles is NOT infectious unless one has never had chicken pox... if
>   someone who has not had chicken pox is exposed to someone with an active
>   shingles outbreak, it is possible to contract chicken pox... but that's
>   the only way/time shingles will affect anyone else...
>
>   here's the official CDC webpage with info re the shingles vaccine:
>   http://www.cdc.gov/vaccines/vpd-vac/shingles/vac-faqs.htm
>
>   many of us here wish it would help prevent/lessen repeat outbreaks or
>   that it would be available to people younger than 60YO... I don't know
>   of anyone who has been able to persuade their physician to prescribe the
>   vaccine off-label (outside the recommended guidelines)... also, it's
>   expensive -- about $150 per vaccine plus doctor's cost to administer the
>   vaccine... not all insurances will cover the shingles vaccine...
>
>   Debz
>
>   Shingles-PHN@yahoogroups.com wrote:
>   > 1. Shingles Shot info
>   > Posted by: "pamrollings" prollings@... pamrollings
>   > Date: Sun Feb 24, 2008 12:34 am ((PST))
>   >
>   > Please help me with info as I was esposed 20 years ago to Genital
>   > Herpes and now my Mom has Shingles and I want to know if the shot will
>   > be helpful or bring on an outbreak?
>   >
>

Debz:

Your Mom shouldn't have been given the shingle shot.  Maybe the doctor was
trying to make her feel better by giving her a fake shot.

Joan
   ----- Original Message -----
   From: Sharon Bruner
   To: Shingles-PHN@yahoogroups.com
   Sent: Monday, February 25, 2008 11:22 PM
   Subject: Re: [Shingles-PHN] Re: Shingles Shot info


   All,
   My mom came down with a severe case of shingles in 2002 on her face and in her
eye. (She didn't loose the eye, but came close) She still has PHN and has
periods where she is miserable. We mostly do the hostilic treatments to help
her. Essential oils help her the best. My daughter makes up a mix for her. I've
emailed in to the group periodically and read the posts. I came down with a mild
case of shingles and got treatment immediatly so I'm fully recovered. My mom is
75 and in otherwise great health. At a checkup last week her regular physician
talked her into the Shingles vaccine. I was stunned when she told me. I told her
that it was impossible, that they don't do it on folks who have had Shingles but
she was insistant she got the vaccine and has the needle mark to show for it. We
live in Washington State. So there are doctors out there who will give you the
shot if you want it. Come to Washington!
   Hugs to you all. Wishing you an easy night.
   Sharon
   ----- Original Message -----
   From: Debz
   To: Shingles-PHN@yahoogroups.com
   Sent: Sunday, February 24, 2008 2:07 PM
   Subject: [Shingles-PHN] Re: Shingles Shot info

   1) genital herpes (Herpes Simples I) will not cause shingles... shingles
   comes from the chicken pox virus which most of us had as a child...

   2) if your mom has shingles now, she is not eligible for the shingles
   vaccine...

   3) shingles is NOT infectious unless one has never had chicken pox... if
   someone who has not had chicken pox is exposed to someone with an active
   shingles outbreak, it is possible to contract chicken pox... but that's
   the only way/time shingles will affect anyone else...

   here's the official CDC webpage with info re the shingles vaccine:
   http://www.cdc.gov/vaccines/vpd-vac/shingles/vac-faqs.htm

   many of us here wish it would help prevent/lessen repeat outbreaks or
   that it would be available to people younger than 60YO... I don't know
   of anyone who has been able to persuade their physician to prescribe the
   vaccine off-label (outside the recommended guidelines)... also, it's
   expensive -- about $150 per vaccine plus doctor's cost to administer the
   vaccine... not all insurances will cover the shingles vaccine...

   Debz

   Shingles-PHN@yahoogroups.com wrote:
   > 1. Shingles Shot info
   > Posted by: "pamrollings" prollings@... pamrollings
   > Date: Sun Feb 24, 2008 12:34 am ((PST))
   >
   > Please help me with info as I was esposed 20 years ago to Genital
   > Herpes and now my Mom has Shingles and I want to know if the shot will
   > be helpful or bring on an outbreak?
   >

   ----------------------------------------------------------

   Internal Virus Database is out-of-date.
   Checked by AVG Free Edition.
   Version: 7.5.516 / Virus Database: 269.19.21/1263 - Release Date: 2/6/2008
8:14 PM

   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

All,
My mom came down with a severe case of shingles in 2002 on her face and in her
eye.  (She didn't loose the eye, but came close) She still has PHN and has
periods where she is miserable.  We mostly do the hostilic treatments to help
her. Essential oils help her the best.  My daughter makes up a mix for her. 
I've emailed in to the group periodically and read the posts.  I came down with
a mild case of shingles and got treatment immediatly so I'm fully recovered.  My
mom is 75 and in otherwise great health.  At a checkup last week her regular
physician talked her into the Shingles vaccine.  I was stunned when she told me.
I told her that it was impossible, that they don't do it on folks who have had
Shingles but she was insistant she got the vaccine and has the needle mark to
show for it.  We live in Washington State.  So there are doctors out there who
will give you the shot if you want it.  Come to Washington!
Hugs to you all.  Wishing you an easy night.
Sharon
   ----- Original Message -----
   From: Debz
   To: Shingles-PHN@yahoogroups.com
   Sent: Sunday, February 24, 2008 2:07 PM
   Subject: [Shingles-PHN] Re: Shingles Shot info


   1) genital herpes (Herpes Simples I) will not cause shingles... shingles
   comes from the chicken pox virus which most of us had as a child...

   2) if your mom has shingles now, she is not eligible for the shingles
   vaccine...

   3) shingles is NOT infectious unless one has never had chicken pox... if
   someone who has not had chicken pox is exposed to someone with an active
   shingles outbreak, it is possible to contract chicken pox... but that's
   the only way/time shingles will affect anyone else...

   here's the official CDC webpage with info re the shingles vaccine:
   http://www.cdc.gov/vaccines/vpd-vac/shingles/vac-faqs.htm

   many of us here wish it would help prevent/lessen repeat outbreaks or
   that it would be available to people younger than 60YO... I don't know
   of anyone who has been able to persuade their physician to prescribe the
   vaccine off-label (outside the recommended guidelines)... also, it's
   expensive -- about $150 per vaccine plus doctor's cost to administer the
   vaccine... not all insurances will cover the shingles vaccine...

   Debz

   Shingles-PHN@yahoogroups.com wrote:
   > 1. Shingles Shot info
   > Posted by: "pamrollings" prollings@... pamrollings
   > Date: Sun Feb 24, 2008 12:34 am ((PST))
   >
   > Please help me with info as I was esposed 20 years ago to Genital
   > Herpes and now my Mom has Shingles and I want to know if the shot will
   > be helpful or bring on an outbreak?
   >





------------------------------------------------------------------------------


   Internal Virus Database is out-of-date.
   Checked by AVG Free Edition.
   Version: 7.5.516 / Virus Database: 269.19.21/1263 - Release Date: 2/6/2008
8:14 PM


[Non-text portions of this message have been removed]

1) genital herpes (Herpes Simples I) will not cause shingles... shingles
comes from the chicken pox virus which most of us had as a child...

2) if your mom has shingles now, she is not eligible for the shingles
vaccine...

3) shingles is NOT infectious unless one has never had chicken pox... if
someone who has not had chicken pox is exposed to someone with an active
shingles outbreak, it is possible to contract chicken pox... but that's
the only way/time shingles will affect anyone else...

here's the official CDC webpage with info re the shingles vaccine:
http://www.cdc.gov/vaccines/vpd-vac/shingles/vac-faqs.htm

many of us here wish it would help prevent/lessen repeat outbreaks or
that it would be available to people younger than 60YO... I don't know
of anyone who has been able to persuade their physician to prescribe the
vaccine off-label (outside the recommended guidelines)... also, it's
expensive -- about $150 per vaccine plus doctor's cost to administer the
vaccine... not all insurances will cover the shingles vaccine...

Debz

Shingles-PHN@yahoogroups.com wrote:
> 1. Shingles Shot info
>     Posted by: "pamrollings" prollings@... pamrollings
>     Date: Sun Feb 24, 2008 12:34 am ((PST))
>
> Please help me with info as I was esposed 20 years ago to Genital
> Herpes and now my Mom has Shingles and I want to know if the shot will
> be helpful or bring on an outbreak?
>

--- In Shingles-PHN@yahoogroups.com, "pamrollings" <prollings@...>
wrote:
>
> Please help me with info as I was esposed 20 years ago to Genital
> Herpes and now my Mom has Shingles and I want to know if the shot
will
> be helpful or bring on an outbreak?
>

Hi:
It's too late for your Mom to get the shot, since she has shingles.  If
you are 60 years old or older you could get the shot. Being exposed to
genital herpes and getting them are two different things.  Ask your
doctor.

The Shingles vaccine is not usually given to someone who has already had
shingles.  Also,  besides its expensive 3 shot series, it has only proven
effective in approx. 1/2 of all cases & a major & well known side-effect is that
it may provoke a stronger case of shingles.

WebMD & PDR health web sites should give you more info & both have consumer
sections that are not written in "medicalese."

I hope this helps you.
Brett Greisen

----- Original Message ----
From: pamrollings <prollings@...>
To: Shingles-PHN@yahoogroups.com
Sent: Saturday, February 23, 2008 9:34:00 PM
Subject: [Shingles-PHN] Shingles Shot info














             Please help me with info as I was esposed 20 years ago to Genital

Herpes and now my Mom has Shingles and I want to know if the shot will

be helpful or bring on an outbreak?














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Hello everyone,
I'm writing because my father has PHN. Just one month ago he was fine
and working on his house and now he's has constant pain in his feet and
legs. He say's it burn like fire, ice and shocks. His doctor's are
giving him meds, but they just aren't working.
I don't know what to do.
All I do is constantly search the internet for treaments, specialist
and new medications....I've found articles ranging from new Rxs, tai
chi, even pot...but I'm not finding anything that works consistantly.
So now I just end up crying all the time and constantly worring about
him. All I can think about is how can I help him feel better.
I just don't know what to do.

Any advice would be appreciated.
Thank you

Like many of you with PHN or recovering from Shingles I have tried
different things do deal with this annoyance, for lack of a better
word.  I am off all meds, and just use some Aveno at bedtime on my
back and boob itch, and that seems to do the trick.  As for exercise I
do Tai Chi daily and highly recommend it.  It will strengthen and tone
your muscles, improve your balance and breathing, and last but not
least will calm the mind and body.  My husband was just diagnosed with
muscle myopathy.  His doctor is the head of the Neurological Research
Center at Barrows Neurological Institute in Phoenix, AZ.   He highly
recommend my husband do Tai Chi.  We have several people in our class
that have various medical conditions and hands down they all see an
improvement in their physical and mental condition.  If you check
around I am sure you could find a class at a college, gym, or as in my
case the local YMCA.  My inspiration is a lady in my class that is 94
years old, and outdo me any day.  My instructor is 74 and he also
teaches all the spinning classes and you know that those are a real
killer.  So for me, Tai Chi and swimming have helped me deal with PHN,
much better than the drugs.
Lauren

hi Elaine!

I understand and applaud your efforts on behalf of your niece! in the 4
years I've been on this list, I've not seen mirror therapy mentioned,
but who knows, it may be someone here has tried it... <smile> the links
were provided for those who may not be familiar with that mode of therapy...

Debz

Shingles-PHN@yahoogroups.com wrote:
> 1a. Re: Dr Lorimer Moseley   "Mirror Therapy"
>     Posted by: "Elaine" caddy495@... caddy495
>     Date: Mon Feb 18, 2008 5:15 pm ((PST))
>
> Debz,
> I know that mirror Therapy is used mostly for phantom pain but I am
> looking at all options for my niece.  I just thought I would post to
> see if anyone has tried it.  Even if it has helped one person with
> PHN maybe it would help my niece.
>
> Elaine
>
> --- In Shingles-PHN@yahoogroups.com, Debz <DebzL@...> wrote:
>> interesting concept! but -- the therapy appears to be focused on
> phantom
>> limb pain after amputation... how would you envision mirror therapy
>> being used for PHN sufferers? mirror the good side?
>>
>> here's some links I found for more info re mirror therapy:
>>
>> http://www.baltimoresun.com/news/nation/bal-
> te.mirrors02jan02,0,6583632.story
>> http://content.nejm.org/cgi/content/full/357/21/2206
>>
>> http://www.newscientist.com/article.ns?id=dn8246
>>
>>
> http://www.feedsfarm.com/article/bf5dd9e54467ed09fa40c7e339341dba70ff1
> c1c.html
>> Debz
>>
>> Shingles-PHN@yahoogroups.com wrote:
>>> 2. Dr Lorimer Moseley   "Mirror Therapy"
>>>     Posted by: "Elaine" caddy495@... caddy495
>>>     Date: Fri Feb 15, 2008 7:48 pm ((PST))
>>>
>>> Hi All,
>>> Just wondering if anyone has tried Mirror Therapy for pain?
>>>
>>> Elaine
>>>

I am so happy for you that you found help for your pain that is
actually helping you be more healthy. I can honestly say i tried
exercising for 6 mos straight. My daughter and i joined a fitness
club. She drug me in at least 3 or 4 days a week. I can say i got
relief while i was working out because when you are exercising your
mind does not acknowledge the pain i dont if that is really how to
word it. But i got no lasting relief. I do think we all need to do
some kind of exercise even if we do not get pain relief. I think it
would help with the stress asociated with the pain. I would love to
start yoga.
lets all try to do something.
Susan

--- In Shingles-PHN@yahoogroups.com, "lobbos72" <deborah@...> wrote:
>
> As someone who had recently started exercising 2 hours a day mon-
fri
> and 1 1/2 hrs on a sat nite (I save sundays for running around
after
> the kids!) I can truly say that it has made an enormous difference.
> Firstly the pain of exercise can surpass the pain of PHN - I have
it
> in my left eye, forehead and scalp. Even though sweating sometimes
> irritates my scalp the benefits outweigh the negatives. Plus
> exercising is a great way to destress as you can let it all out in
> the gym. I do a variety of things, some days i am in the exercise
> room using the arc strider machine (i think its like and
eliptical!)
> and doing weights and other days I take cardio classes and deep
water
> running (exercise in the water). As well as helping me with dealing
> with the PHN it has also help me lose weight (the lyrica made me
blow
> up like a balloon) and my skin is even better than it was. It has
> also helped me come out of the depressive funk i was in. I was
> suffering from post-partum depression before i got shingles and of
> course the shingles added to the depression but the gym has turned
it
> all around and given me a ton of energy. My kids are happier and
> hubby is happier as i am much happier. I have also modified my diet
> so I am eating better and I have stopped taking ALL of the
> medications prescribed. Yes I have days (well usually nights) where
i
> want to scratch the skin off my head but i wont let it beat me back
> to meds so i deal with it and go back to sleep.
>
> I hope this helps someone as I know how evil the pain of PHN can be
> and with all the meds its so hard to have a clear head. Now all i
> have to get through is the cornea transplant in April and hopefully
I
> will start getting back to normal and can even go back to work.
>
> As a reformed couch potatoe I truly recommend the power of
exercise.
> At ANY age. Some of the senior citizens at the gym could seriously
> put me to shame with how fit they are!
>
> Wishing everyone a pain free existence
>
> Deborah (Lyrica free for over 2 weeks and 17 lbs lighter!!)
>

Debz,
I know that mirror Therapy is used mostly for phantom pain but I am
looking at all options for my niece.  I just thought I would post to
see if anyone has tried it.  Even if it has helped one person with
PHN maybe it would help my niece.

Elaine

--- In Shingles-PHN@yahoogroups.com, Debz <DebzL@...> wrote:
>
> interesting concept! but -- the therapy appears to be focused on
phantom
> limb pain after amputation... how would you envision mirror therapy
> being used for PHN sufferers? mirror the good side?
>
> here's some links I found for more info re mirror therapy:
>
> http://www.baltimoresun.com/news/nation/bal-
te.mirrors02jan02,0,6583632.story
>
> http://content.nejm.org/cgi/content/full/357/21/2206
>
> http://www.newscientist.com/article.ns?id=dn8246
>
>
http://www.feedsfarm.com/article/bf5dd9e54467ed09fa40c7e339341dba70ff1
c1c.html
>
> Debz
>
> Shingles-PHN@yahoogroups.com wrote:
> > 2. Dr Lorimer Moseley   "Mirror Therapy"
> >     Posted by: "Elaine" caddy495@... caddy495
> >     Date: Fri Feb 15, 2008 7:48 pm ((PST))
> >
> > Hi All,
> > Just wondering if anyone has tried Mirror Therapy for pain?
> >
> > Elaine
> >
>

As someone who had recently started exercising 2 hours a day mon-fri
and 1 1/2 hrs on a sat nite (I save sundays for running around after
the kids!) I can truly say that it has made an enormous difference.
Firstly the pain of exercise can surpass the pain of PHN - I have it
in my left eye, forehead and scalp. Even though sweating sometimes
irritates my scalp the benefits outweigh the negatives. Plus
exercising is a great way to destress as you can let it all out in
the gym. I do a variety of things, some days i am in the exercise
room using the arc strider machine (i think its like and eliptical!)
and doing weights and other days I take cardio classes and deep water
running (exercise in the water). As well as helping me with dealing
with the PHN it has also help me lose weight (the lyrica made me blow
up like a balloon) and my skin is even better than it was. It has
also helped me come out of the depressive funk i was in. I was
suffering from post-partum depression before i got shingles and of
course the shingles added to the depression but the gym has turned it
all around and given me a ton of energy. My kids are happier and
hubby is happier as i am much happier. I have also modified my diet
so I am eating better and I have stopped taking ALL of the
medications prescribed. Yes I have days (well usually nights) where i
want to scratch the skin off my head but i wont let it beat me back
to meds so i deal with it and go back to sleep.

I hope this helps someone as I know how evil the pain of PHN can be
and with all the meds its so hard to have a clear head. Now all i
have to get through is the cornea transplant in April and hopefully I
will start getting back to normal and can even go back to work.

As a reformed couch potatoe I truly recommend the power of exercise.
At ANY age. Some of the senior citizens at the gym could seriously
put me to shame with how fit they are!

Wishing everyone a pain free existence

Deborah (Lyrica free for over 2 weeks and 17 lbs lighter!!)

--- In Shingles-PHN@yahoogroups.com, "Shayna" <shaynae143@...> wrote:
>
> Gwen,
>  if you want to try the natural route i would strongly suggest
> acupuncture...it helped me A TON...it works great for stress too.
> sadly after a few months i hit a pleateu with it so i am now seeking
> more medical assistance. i dont know where you are located but i have
> an AMAZING accupuncturist that i would recommend in the southeast ma
> region.
>
> i hope it helps and wish you the best of luck.
>
> shayna
>
Thanks Shayna,
I actually did not even think of accupuncture as an option.
Accupressure might also help I guess.  I live in Northern California,
Mendocino County.  I work as a medical transcriptionist so I know most
of the medial professionals in the area.  I'm just not sure if our
insurance will cover accupuncture treatments, I will have to find out
about that.  I actually feel lucky after reading some of the other
posts on this board because I am not suffering as badly as some of
you.  I just feel bone tired all the time and feel like I am coming
down with  the flu.  The Valtrex seems to keep my outbreaks mostly
under control, but sadly it does not help with my other symptoms.
Exercising everyday, no matter what, is helping more than I thought it
would and maybe over time it will help more.  I just don't know.
Thanks again, Gwen

interesting concept! but -- the therapy appears to be focused on phantom
limb pain after amputation... how would you envision mirror therapy
being used for PHN sufferers? mirror the good side?

here's some links I found for more info re mirror therapy:

http://www.baltimoresun.com/news/nation/bal-te.mirrors02jan02,0,6583632.story

http://content.nejm.org/cgi/content/full/357/21/2206

http://www.newscientist.com/article.ns?id=dn8246

http://www.feedsfarm.com/article/bf5dd9e54467ed09fa40c7e339341dba70ff1c1c.html

Debz

Shingles-PHN@yahoogroups.com wrote:
> 2. Dr Lorimer Moseley   "Mirror Therapy"
>     Posted by: "Elaine" caddy495@... caddy495
>     Date: Fri Feb 15, 2008 7:48 pm ((PST))
>
> Hi All,
> Just wondering if anyone has tried Mirror Therapy for pain?
>
> Elaine
>

Gwen,
  if you want to try the natural route i would strongly suggest
acupuncture...it helped me A TON...it works great for stress too.
sadly after a few months i hit a pleateu with it so i am now seeking
more medical assistance. i dont know where you are located but i have
an AMAZING accupuncturist that i would recommend in the southeast ma
region.

i hope it helps and wish you the best of luck.

shayna

Hello Everyone,
I joined this group a while back, but I have not had time to post
anything until now (I work almost all of the time).  I have had
recurrent shingles for many years, probably about 25, and at this
point I am sick most of the time.  I have accepted the fact that I
probably have PHN.  I am already taking Valtrex everyday and I am not
sure that I want to take Neurontin too, so I have decided to try to do
more to reduce the stress that actually makes me sick.  I read that
some of you are getting relief from exercise, which is what I have
been doing. I would love to hear more stories from any of you about
any natural remedies for PHN, such as herbal supplements, meditation,
exercise, etc.  My main problem is that I internalize my stress, which
was not a problem when I was young, but now that I am approaching 60
it is really a problem in terms of how I feel.
Gwen

Hi All,
Just wondering if anyone has tried Mirror Therapy for pain?

Elaine