Patient Comments: Postherpetic Neuralgia - Symptoms and Signs

What symptoms and signs did you experience with postherpetic neuralgia (PHN)?

Comment from: Katy, 65-74 Female (Patient) Published: February 29

I have had PHN (postherpetic neuralgia) for twelve years down the right side of face/head. I have had acupuncture at different sources and have tried lots and lots of painkillers. The pain is constant and even a slight breeze lifting my hair is painful. Washing my hair or having it cut is painful. I sleep with the bed covers under my armpit to avoid them touching me. The itching in the morning only makes it sorer. I really feel for anyone else that is suffering from this awful condition.

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Comment from: owlish, 65-74 Female (Patient) Published: January 06

I got over the shingles fine, it was on my head, on the right side. However, it was followed by the worst case of sciatica I have ever had, in my right leg, from my buttock to my ankle and even my toes. I thought it was just a coincidence. But it continued to get worse. Then I discovered ice, which seemed to reduce the pain enough so I could sleep at night, and I took coated aspirin, four 81 mg tablets every 4 hours. The pain lingered, and then it seemed to be getting better and I could walk again without pain. But I noted with surprise that I suddenly had allodynia (hypersensitivity to touch, with a fiery pain resulting) in my upper leg at the top of my thigh, right side. Clearly, what I thought was really bad sciatica was postherpetic neuralgia (PHN). It's getting slowly better, but I am surprised, since I thought the pain if I got PHN would be on my head, where I had the rash. Nope.

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Comment from: peedee, 55-64 Female (Patient) Published: July 28

I have postherpetic neuralgia (PHN) for 8 years and I agree with the others that it's the most awful pain to have. I never have shingles with the rash, I was told that you can get the shingle virus without having a rash. My pain is on the left side, I describe the pain as someone putting an electrical volt and shocking me with it. Then it also has a stabbing pain. Every breath I take causes spasms. I scream with pain at times. It's awful.

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Comment from: gfergo, 75 or over Male (Patient) Published: April 25

I have shingles for over 6 months and although the shingles have gone after the first month, the postherpetic neuralgia pain still exists in the area around my left eye where it started. It is not an intense pain now, but extreme numbness in the eye brow and surrounding area; also pressure points on the head where touching these points hurts like the dickens. I have tried all kinds of prescription pain killers, also low dosage Elavil, high dosage Lyrica... nothing works! What works the best is cold on the pain area!

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Comment from: Peanuts, 55-64 Female (Patient) Published: April 17

I am a rare case who developed shingles at the age of 18. I have suffered for years and last year at the age of 57 I developed postherpetic neuralgia (PHN). I thought shingles pain was bad. Was I in for a big surprise! The pain of PHN is excruciating and it lasts for months. It"s now been a year later and I had numerous outbreaks of shingles due to a great deal of stress in my life followed by PHN, the pain is in my leg, deep, gnawing, can"t lay down, sit down, don"t want anything to touch my leg. It"s horrible. I take acyclovir for shingles and opioids for the pain but it does not help much. I do not wish this upon anyone. Get the shingles vaccination is my advice.

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Comment from: Irene, 75 or over Female (Patient) Published: February 16

I have had reoccurring corneal ulcers over the years and this is the first time it has followed on to postherpetic neuralgia down the right side of my face and in my eye. It is brutal. One can scream when the bouts start and you cry without even realizing.

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Comment from: wblady, 65-74 Female (Patient) Published: July 21

I have had postherpetic trigeminal neuralgia for 6 1/2 years. I developed shingles on the right side of my face from my forehead in and around my eye and down to my top lip. I have a scar on the cornea and lost the sight in my right eye. I have tried Lyrica, gabapentin, nerve blocks administered in my eyebrow and pain pills which have made me ill. About two years ago, my doctor suggested I try Gralise. It is an extended release gabapentin made specifically for postherpetic neuralgia. It has helped more than anything else, but doesn't alleviate the pain altogether. Try it!

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