Patient Comments: Postherpetic Neuralgia - Symptoms and Signs

Question:

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

Comment from: William, 75 or over Male (Patient) Published: April 30

I have now had the shingles going on 4 weeks, as far as I know. It developed on my scalp, left side of neck, and left shoulder. The attacks on my scalp are torturous, and every day. Nothing stops this from happening. My scalp and left side of my head are so sensitive that I cannot lie down on a pillow to sleep at night. Even having a t-shirt on hurts the back of my neck and shoulder. I am trying to find the best way to cope with this. I feel as though this postherpetic neuralgia is going to kill me.

Comment from: Cecilia , 55-64 Female (Patient) Published: November 05

I had the shingles and at first thought I was having a heart attack. It hurt really badly. I thought after the rash was gone and I finished the medication for shingles it would be smooth sailing. Well, that's not what happened. I started to experience the shocking, painful, burning, deep itching of postherpetic neuralgia (PHN). I had no idea what was happening to me. I went to the doctor and I've been taking gabapentin for 1 month, it hasn't helped much at all. I called my doctor yesterday and told them I need to try something else.

Comment from: Scoop, 55-64 Male (Patient) Published: September 13

It's a beautiful day in Florida, but postherpetic neuralgia (PHN) has me inside, on the floor again from unbelievable pain in my back wrapping around my rib cage. The pain intensity and type varies 24/7 for me... burning pain where the humidity outside is simply unbearable and any sweat ignites the skin, or the electric shock nerve spasm that drops me down to my knees. I haven't read any comments about nausea and rapid heartbeats… on an ultra-bad day it cranks up to 170 beats per minute. A never ending nightmare so far.

Comment from: marcsails, 65-74 Male (Patient) Published: July 27

I have had postherpetic neuralgia (PHN) for over 10 years, a severe pain to left side of face, neck and ear. I take 2400 mg of gabapentin daily, but no relief! Looking for any new treatments out there.

Comment from: mike, 55-64 Male (Patient) Published: March 20

Contemporaneous with the decline of my shingles was a muscle tightening on my right side inhibiting my ability to walk. It had nothing to do with pain medications, of which I had none. Muscle tightening went the path of the shingles, almost all on my buttocks and down my right leg. But also going up my right chest, no shingles there. My right foot also had pain. Pardon me, has pain. I was prescribed gabapentin, 1200 mg a day spread from morning to night. I also went back to the gym in hopes stretching will relieve the postherpetic neuralgia (PHN) and that seems to work. An effect of shingles was atrophy of my lower body since I could not walk much. Exercise, gently with lower weights and higher repetition; that helps too.

Comment from: Sue, 75 or over Female (Patient) Published: February 13

I have had postherpetic neuralgia (PHN) for 3 months. Three weeks ago I had a nerve block that stopped the stabbing pain. I still have pain and muscle spasms where the sharp pain had been. The pain management doctor is going to do another nerve block to get rid of the pain and spasms. None of the opioids or gabapentin helped.

Comment from: Mikeyd, 65-74 Male (Patient) Published: February 09

I'm suffering postherpetic neuralgia now in ophthalmic region of left side of head (3 months), but never had shingles. Pain has been manageable recently, but I had horrible burning seizures in the first month. I take 900 mg gabapentin, 3 times per day, so I assume it helps the pain. What's driving me mad is the itching. Only ice or cold compresses provide any (temporary) relief. I'm about to get my first nerve block injection. I wonder if there is any reason to believe it may help combat the itching.

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.

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.

IMAGES

Postherpetic Neuralgia See pictures of shingles and other viral skin conditions See Images
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.

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!

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.

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.

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!

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.

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.

Comment from: Greywolf, 75 or over Male (Patient) Published: June 08

I have postherpetic neuralgia (PHN). I just recently had shingles. I take mega doses of vitamin C and olive leaf extract. I think they are helping. Hope this helps someone.

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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