Postherpetic Neuralgia (Shingles) nerve damage

Posted by oran baughn @oranbaughn, Feb 27, 2012

Postherpetic Neuralgia (Shingles) nerve damage around eye, eyebrow, forehead & scalp (8 years) has anyone had any sucessful treatment other than drugs

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I have had nerve pain in my back and side from the shingles in 2015. I still have it and have tried everything my doctor suggested. Nothing has helped. It is driving me crazy. Anybody have the same problem. I also have had back surgery 2 times. Was successful. Went back to my doctor and he said back was fine. Sent me to the pain clinic for a shot which lasted 2 days. Any ideas would be helpful

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@paulbklyn

I have postheptic neurglia r/s neck and shoulder.. Have the second spinal cord stimulator just implanted. helps a little my problem is at night can't fall asleep. I get night pain the drugs no longer help, did acupuncture, no help, took currium root no help. Anyone have some suggestions, or a good pain dr in NYC? Happy Thanksgiving to all.

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@paulbklyn Good morning and welcome to MayoClinicConnect. We’re a community who try to support one another through shared health experiences. I’m sorry that I know nothing about post herpetic neuralgia. Have the doctors who have treated you explained why the pain continues? What have they suggested?
I’m going to ask @ethanmcconkey if he can move your post to a discussion where it will het more notice

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I have postheptic neurglia r/s neck and shoulder.. Have the second spinal cord stimulator just implanted. helps a little my problem is at night can't fall asleep. I get night pain the drugs no longer help, did acupuncture, no help, took currium root no help. Anyone have some suggestions, or a good pain dr in NYC? Happy Thanksgiving to all.

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Hi, @paulbklyn – having postherpetic neuralgia is painful and very uncomfortable. I had it for about 7 or so weeks after having shingles.

In my case, I took gabapentin, and didn't experience side effects and got some relief. I was scared to trial off of it when the doctor suggested it, due to fear of the itching, pain and burning coming back, but it turned out okay.

Is yours related to a case of shingles, paulbklyn? What drugs did you and your doctor try thus far?

@deloresp – that sounds very difficult to deal with postherpetc neuralgia for 4 years. What treatments have been tried thus far? What shot were you given?

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@becsbuddy

@paulbklyn Good morning and welcome to MayoClinicConnect. We’re a community who try to support one another through shared health experiences. I’m sorry that I know nothing about post herpetic neuralgia. Have the doctors who have treated you explained why the pain continues? What have they suggested?
I’m going to ask @ethanmcconkey if he can move your post to a discussion where it will het more notice

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Hi Becky, happy New Year

I'm on my second spinal cord stimulator with good results.
Only get serve pain 3, 4 times a month.
Most of the time pain in 2 or 3 range.

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@lisalucier

Hi, @paulbklyn – having postherpetic neuralgia is painful and very uncomfortable. I had it for about 7 or so weeks after having shingles.

In my case, I took gabapentin, and didn't experience side effects and got some relief. I was scared to trial off of it when the doctor suggested it, due to fear of the itching, pain and burning coming back, but it turned out okay.

Is yours related to a case of shingles, paulbklyn? What drugs did you and your doctor try thus far?

@deloresp – that sounds very difficult to deal with postherpetc neuralgia for 4 years. What treatments have been tried thus far? What shot were you given?

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Hi Lisa Happy New Year

Yes my pain is due to shingles.

Now under control, only some bad nights a month

I use to be on every heavy drug there was now only take a pill at night when pain gets bad

On gabapentin, 800x 3 times a day, I don't it's doing anything but dr said stay on it

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@deloresp

I have had nerve pain in my back and side from the shingles in 2015. I still have it and have tried everything my doctor suggested. Nothing has helped. It is driving me crazy. Anybody have the same problem. I also have had back surgery 2 times. Was successful. Went back to my doctor and he said back was fine. Sent me to the pain clinic for a shot which lasted 2 days. Any ideas would be helpful

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Inquire about a spinal cord stimulator, nerve burning,

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@paulbklyn

Hi Lisa Happy New Year

Yes my pain is due to shingles.

Now under control, only some bad nights a month

I use to be on every heavy drug there was now only take a pill at night when pain gets bad

On gabapentin, 800x 3 times a day, I don't it's doing anything but dr said stay on it

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@paulbklyn
Hi there,
Do you know why your physician wants you to stay on a medication that’s ineffective? Hopefully you don’t have any side effects from it. Shingles is awful, been there done that but didn’t have the lasting effects like you.
Good luck to you,
Jake

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Thank you Jake almost 8 years

I find each Dr has their own ways of treating PHN, each one has teir favorite Stimulator Company.

Happy New Year

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@1977lizzy

Oxy…yikes. Hope you can get off that. I can't take 600 mg. gabapentin either so I take 200mg morning and 200 mg evening. I also now, after 9 years, have a topical compounded cream to apply several times a day to my forehead, eyebrow area. I went to a pain management anesthesiologist and he had this put together for me. It contains lidocaine, gabapentin and several other drugs. For several years my eye didn't dilate properly and that led to extreme light sensitivity. Your symptoms may go away at this point. Most do. Only a few of us have years of problems. In my case, I wasn't diagnosed & put on anti-viral promptly. I had a severe headache and no blisters until the fourth day.

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I got shingles in my eye about 5 months ago. My eye is fine except doesn't dilate properly causing light sensitivity. I am happy to know your eye returned to normal in a few years. Some hope my ophthamologist said it never would be normal. Wondering if anyone one else had that symptom. I still have pain and sensitivity around eye and head but tolerable.

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@1977lizzy

You are very kind to respond in detail. I do take stress Rx and Gabapentin which helps a bit, but with side effects. My M.D. is checking with pain clinic in nearby university medical center regarding the possibility of radio frequency ablation being used for trigeminal nerves. I was in hospital four days before being diagnosed & then given Valtrex in large doses. The blistering on my forehead/eye/scalp didn’t pop out until days of severe unilateral headache. I was on IV Demerol but my family asked for an ophthalmologist consult because I kept saying my eye was the problem. He diagnosed me the minute he saw me. Then I was moved to isolation. My eye wasn’t dilating properly for months so I could not tolerate light…….and driving! I consulted a neurosurgeon who offered an experimental brain surgery. I declined that !! I take Rx for sleeping and use frozen gel pack on my head at night or any time itching/pain gets out of control.

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So is your eye dialating properly now. I 'm looking for some hope.

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@glenbard

I got shingles in my eye about 5 months ago. My eye is fine except doesn't dilate properly causing light sensitivity. I am happy to know your eye returned to normal in a few years. Some hope my ophthamologist said it never would be normal. Wondering if anyone one else had that symptom. I still have pain and sensitivity around eye and head but tolerable.

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Hello @glenbard,

I'm sorry to hear about your experience with shingles in your eye. You said that the ophthalmologist said, "it would never be normal." As eye-sight is a very precious commodity for all of us, have you considered getting a second opinion?

Second opinions can be a very important tool for any disorder that seems untreatable. There are many health care facilities that specialize in hard-to-treat disorders. It is important for every patient to advocate for themselves and to get the most knowledgable physician for the best possible treatment.

If you would like a second opinion, you might consider looking for a good Eye Institute and making an appointment. Often university medical schools have Eye Institutes. You could also consider a good multi-disciplinary health center like Mayo Clinic. If you live near a Mayo facility (Minnesota, Florida or Arizona), here is the link for appointments, http://mayocl.in/1mtmR63.

Will you consider a second opinion at an Eye Institute?

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