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.
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

Welcome to Neurotalk.
 

It does sound like you've been through the wringer.

One of the interesting things you mentioned is that during cancer therapy, your pain decreased, rather than increased; the latter has been the expereince of most people during chemotherapy, as most of those drugs, especially the ones that are metal-base, are highly neurotoxic. I wonder if you may be having a delayed reaction (chemotherapeutic neuropathy does take a while to develop). Is your pain now exactly in the same spots your shingles pain was? That would be unusual, though since the nerves in the distribution are already damaged, it wouldn't take much to set them off again (through what is known as the "double crush phenomenon") . . .

Come on over to the Peripheral Neuropathy part of Neurotalk:

http://neurotalk.psychcentral.com/forum20.html


Lots of us talking peripheral nerve damage (from various causes--and causes unknown) there.

Hi Erinda and Welcome to NeuroTalk. Your intro was very touching and I appreciate your sharing it w/us. You have such a great positive attitude. I see Glenn has given you some great info, so I'll gust add that I'm glad you found us.

FWIW" I used to work w/a lady that had Alopechia and she also wore wigs, but even w/o them, she was a beautiful person inside and out. I'm guessing you are too!. Welcome again.

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Hi Erinda,
 

Your story really touched me. It's hard to believe what people go through and come out of it so positive.

On the shingle parts. I had them on my right side back in the 80's and now deal with pain there a lot. I wanted to mention Lidoderm patches to you. It might be that you can wear one at night for the pain. They are 12 hours on and 12 hours off and they do help with the pain.

The lidoderm patches are prescription so you will have to ask your Dr. for a script. YOu can actually wear 3 of them at a time.

I know you will find some great help here and also great support.

Ada

Thanks, Ada
 

Thanks, Ada, for your very caring response to my request. Yes, I have tried Lidoderm patches (the strongest dose that can be prescribed). It did nothing. But that was very early on and since you brought it up, I will give it another try. I'm dealing now with the residual pain so it might make a difference.....I'm open!
Lyrica has been suggested to me. It is the only drug that I haven't tried that relates to pain. Have you, or anyone you know, had any experience with it?
It is quite new. A very dear friend, who suffers with sever fibromialgia said it has given her a great deal of relief. I want to know what the side effects are.
Thanks for your suggestion about the Lidoderm patches. I'm off to try them immediately. Will respond after testing it again.. Thank you.

Thank you, I haven't heard of chemotherapeutic neuropathy, but I will ask my neurologist about it and the term "double crush pehnomenon" as well. I'm absolutely determined to find something for this that will work and I'll take any and all suggestions that can lead me to assistance, pain relief and hopefully an end to it....:-)
Any experience with Lyrica? If so, any side effects?
Thanks,
Erin

Hi,
 

Before you go on the Lyrica please read up on the side effects. You might to go the RSD or Fibro forum and read on it. There are a lot of side effects it seems. I have seen weight gain being one of the worst with unnatural weight gain. I took it and gained 7 lbs in just a week and quit it really quick. If you need to gain weight it is ok but if you have medical problems that it interfers with then a person doesn't need the extra weight.

Another one that is popping up is messing with the attitude. It makes people deal with such feels as anger and hostility. There are others but I can't think of them right now. Go to the RSD forum and read on it and even ask about side effects on it so you can decide which way you want to go.

I do know what you mean about the pain. I have trouble standing for any length of time and the pain gets unbearble. Everyone seems to get shingles in different places but I notice they still deal with the leftover pain of them.

Glad you like it here.

Ada

Experience with Lyrica?
 

Hello:
Has anyone had any experience with Lyrica in using it for nerve pain? If so, what side effects? Your opinions and help will be appreciated. I've used neurontin with barely any noticable results. Looking for relief from Post Herpetic Neuralgia from shingles....a year and a half ago :-(
Thank you......