New and looking for info on Post Herpetic Neuralgia
Hello:
My name is Erin. I just discovered NeuroTalk while searching the internet for information for the relief of nerve pain (post herpetic neuralgia) from a bad case of shingles a year and a half ago. I've tried almost everything available, including acupuncture, hypnosis, body work, every imaginable homeopathic remedy and I own more topical creams than a drug store. The shingles started up the back of my neck and spread up my neck and over my left ear. What complicates it for me is that 30 years ago I developed Alopecia, which is hair loss. It turned out to be Alopecia Universalis, which left me with no hair on my body...anywhere....no, not even "there" :-)....I am still a very active real estate agent and I've worn a wig for the last 20 years. This relates to what I'm saying because without the wig, I feel no nerve pain. But when I put the wig on, because it goes over the nerve pain area, the pain is quite severe and almost constant. I have a very high pain threshhold and a very positive attitude but the constancy of the discomfort is affects the quality of my life. I just finished treatment for breast cancer and am doing great. Chemo was the pits, but taking it one day at a time, I got through it with flying colors....so far..:-). While I was on chemo, the pain subsided and was almost gone...so I happily thought it was gone....but alas, now that the drugs are getting out of my system, the nerve paid is back again.
I am not here for sympathy. I gave you my experiences so far so that if anyone can relate, it might help to know my history. I have learned so much from each of these "conditions" and am grateful for the difference each of them has made in my life. But I am here to ask if anyone has found anything that works for Post Herpetic Neuralgia. Or I would appreciate hearing from anyone who has or has had experience with PHN.
Has anyone tried Lyrica? If so, any side effects?
From reading previous posts, it sounds as though you have a very caring and supportive group of advisors and members. I am very happy to have found you....
Looking forward to hearing from someone who can relate,
Hopefully,
Erin

Welcome to the board. You certainly have been thru the mill. I know we have at least one member who has been thru chemo, and has PN. I likely have a hereditary PN, no matter....pain is pain. Shingles or post herpetic pain is about as bad as it gets.

I have tried Lyrica and Neurontin, and prefer Lyrica, but am in a snit with my insurance company, who wont pay for Lyrica. Neurontin makes my primary vehicle a broom, if you know what I mean. So I am not taking either right now.


I would certainly give Lyrica a try, it might work for you. I felt pretty dopey for a while on it, my first trial I quit. But ended up with a horrible bout of itching several months later and Lyrica relieved it, so we tried to get me a script when I ran out of free samples and that is when I ran into insurance issues.

Have you tried Lidoderm patches perhaps cut up and put on the area that hurts you so much? I can slightly relate. I had shingles about 2 years ago and it was the nerve that was at waistband and bra level. I don't have constant pain, I was lucky. But every now and then it starts the old tingling feeling. I am so sorry you have such pain. If you are able to put the patch on the nerve root also it might help.

Here is something else you might explore: http://health.yahoo.com/nervous-trea...698CCC0B8.html

Oh...welcome to our group.

Billye

Hi Erin:

Welcome to our little group.

My mom had shingles. My aunt had it in her eye. I know so many people who suffered with shingles, well my heart goes out to you.

I remember when my mom had it, the doctor explained that you can only get it on one quadrant of your body. Is this still true?? He explained that if you get it on your front, you can't get it on your back.

Now I have no idea what the heck he was talking about because shingles is from the chickenpox virus so why can you only get it on one quadrant?

But I'll never forget being at the doctor with my mother and the doctor was examining these blister looking VERY PAINFUL things on her stomach.

That's when he went into the whole explanation.

They didn't have lyrica or neurontin way back in those days.

But today, thankfully, there are meds you can take for nerve pain.

Do you really wear the wig when you are in such discomfort?? I can't imagine going to work and being in pain all day long. We have to find you something to take the edge off.

Perhaps the lidoderm patch as Silverlady suggested??

You are probably an old pro on what actually works for you and what DOESN'T work for you.

I am so sorry to hear that you had to go through chemo.

You sound like a heck of a fighter.

We need you on these forums.

Take care.

Thanks Melody for your caring response to my request. Yes, I tried Lidoderm patches and they did not help. You see, when the rash was at its worse, topical treatments worked some of the time. But it's been almost two years now since I had the rash. The nerve pain is now in the areas where the blisters were. One of your members, Robert, has suggesed and sent me a topical product, which is a derivitive of the musroom. I just received it and will try it as he suggestes and keep you posted.

I gouess it's a cropss bewtten personal dignity and vanity that I wear the my wig all the time while I am working. I do have brief periods of time when the pain is minimal and bearable....Then there are the other times *&$%^$#@*!!!! But I am detrmined to find something that will heal the nerves and, in the meantime, make the pain tolerable. Thansk for your car,ing, thoughtful suggestions. I will not give up until I find something to heal this condition. Strangely enough, meditation by far helps more than anything.....but it is a state I cannot stay in and do business. I'm just structuring my time to find the time to take a few moments each day to sit quietyly and let it be...without my wig on of course...:-)

Thanks again Melody,
Erin

Your quite welcome hon.

Too bad this is not the 1960's. You could go out without your wig, put a headband on, and you'd be a hippie. I remember things 40 or so years ago. Nobody looked twice at anyone who walked in the streets.

I really do wish that you could throw off your wig and decorate your head and laugh at everybody so people could see the TRUE YOU!!!

Reminds me of the first Star Trek motion picture. There was a character (you have to excuse me because I'm an old trekkie). This character was a Deltan. And no one had hair on her planet. All of a sudden the most beautiful actress appeard wearing this gorgeous decorative ring on her head.

The first thing I said was "This actress had to have shaved her head for this role". and yup that's exactly what happened. She looked gorgeous.

Also, and I don't know if you know Tyne Daly, but for her 50th birthday, she shaved her head. I remember her on The Tonight Show and I said "wow, that's something different". Her reason?? She wanted TO DO SOMETHING DIFFERENT on her 50th Birthday.

So I hope you hang around your house wig free and pain free.

Nice to meet you. Stay strong!!!

I shaved my hair to about 1/2 in because it felt like i had electricity going thru it.everyone loves it.
Hope you find something to help your pain. But bald is beautiful.
Nancy K

Women who have no hair look ok to me. Some look better without hair.
I remember when men did not want to be bald. But now, it is the rage to be completely bald.

If not wearing a wig makes the pain lessen, go for it.

it provides suggestions on foods high in lysine (which is good) that can alleviate some symptoms.

My uncle has shingles over one shoulder and it won't go away, he has tried heaps of things including Lyrica but said it only helps a little, but i have an aunt who had shingles around her belly region, she is right into vitamins but anyway she started taking multi B vitamins and after a while the shingles went away, she's told my uncle to try B vitamins but for some unknown reason he won't, i think he has just given up, but who knows, maybe worth a thought.
I agree with Herb, i have seen plenty of women who haven't any hair and they still look attractive, some even quite stunning.