Patient Comments: Postherpetic Neuralgia - Symptoms and Signs

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

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: 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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Comment from: pianogal, 65-74 Female (Patient) Published: February 26

I have postherpetic neuralgia (PHN). I am a heart patient with a defibrillator and a mitral metal valve. I have suffered for approximately 5 months. The nerve pain has subsided but the itching hasn"t. I went to my primary physician yesterday and asked for medication (Elavil) 5mgs. Gabapentin has done nothing, I wonder why the itching increases upon waking in the morning.

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Comment from: Pianogal, 65-74 Female (Patient) Published: November 20

I suffer from PHN, it is so painful! I am taking gabapentin but there is still pain and the medication makes me drowsy. The pain is so debilitating. I am also a heart patient with a mitral metal valve and a defibrillator. Cool showers help for a while but there seems to be nothing available to help us.

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Comment from: dawn, 65-74 Female (Patient) Published: April 16

I have been told by my doctor I have postherpetic neuralgia but I have never had the shingles.

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