Postherpetic Neuralgia :: What Makes It Better And Worse?
Jan 18, 2016
From reading many other threads, it seems to me that one frustrating thing about this condition is that there's no one-size-fits-all description or solution. Is there anything outside of heavy prescriptions that soothes your pain, and are there any triggers that make it worse?
Here are things that usually provide some relief:
1.Epsom salts compresses - help calm down the skin sensations
2. Rose geranium oil - helps with the skin pain and stabbing, and the scent is calming to me
3. Heating pad - helps when the pain is deeper, or maybe it just relaxes my tense muscles
4. Ibuprofen - helps with the aches
5. Acetaminophen - I don't think this works as well as ibuprofen, but I haven't given up on it.
6. Sleeping. I usually wake up at a level 0 or 1, and it builds up as I go about my day.
7. Sitting quietly. No friction when I'm not moving.
8. Exercise. Maybe it's true what they say about endorphins.
9. Sometimes stretching or scratching provides relief.
Things that make it worse
1. Coffee
2. Lack of sleep
3. Possibly my hormone cycle; I'm not certain about this one
4. Sometimes, it's worse if I stretch, scratch, exercise, or sit still. Yup, these are also on my list of things that sometimes help. [eek]
5. Random triggers I may never be able to identify.
Do any of these things sound familiar to anyone else? Or is there a good possibility this isn't PHN but something else? Like, losing my mind?
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I've been suffering from PHN for about 2 and half years. The pain is mostly around my eye, temple and forehead, sometimes the top of my head. Lately I've been finding that I get very drowsy after an "attack" of pain. Does anyone else ever get that? I can't work out if it's an effect of the pain or a side-effect of the medication I'm on (which is a mix of Cymbalta and Pregabalin).
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My 91 year old father contracted Shingles in November 2014 and from being totally independent - living alone and driving a car he had to move into care as has suffered postherpetic neuralgia since. He has shooting pains going down the sciatic nerve in his right leg. It seems like he has been on every drug known to man and although some of his pain has been alleviated he still has excruciating episodes. His only means of relief is to stand so can spend hours sitting/standing/sitting/standing. He has, however, since the shingles suffered edema in his right leg also. Amazingly he still tries to maintain some independence and tries to walk, however, this is so difficult now that his leg is so heavy and swollen. I don't seem to be getting any answers as to why he has this Edema. He never had it before the shingles and although he had it mildly afterwards it is now extremely bad. I'm wondering whether it could be the medications that he's on and would be interested if anyone else as experienced this and what the cause was.
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Having deal with PHN now for 7 years it still is important to me to share information with others that are afflicted by this terrible condition or with others that suffer from chronic pain. Important because it is reassuring is to hear how others are impacted and trying to cope in their lives. It is terrible to constantly have to turn down or cancel social engagements because you cannot bare the pain, are so distracted that you can't focus on a conversation or do an activity that you enjoyed before. You get tired of responding to people "how do you feel" "how is it going" and many times you don't look that bad. One doctor said PHN is like the pain of cancer but without the relief of death. Not looking for sympathy from others but it is tough on family and friends given they don't really understand. I tell people now best the pain of a stinging nettle and worst is like a bad burn/scalding and rubbing sandpaper on it. People also don't understand (as I dont as well) why it strikes when it does. Everyday for me - but usually later in day after I have had too much irritation from the clothes. I want to say thank you to a number of people on this site for giving me my sanity back.
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I have lost hearing in that ear and bad tinnitus and imbalance. what can I do
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Six weeks on after first ever attack of shingles at the age of 75, I am Completely physically, mentally and emotionally drained, despite plenty of sleep and rest. Appetite is fine. Still suffering some ache in head owing to an effect called Cradle Cap which I have been prescribed ointment.
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I had shingles in October 2013 followed by what was assumed to be postherpetic neuralgia. I have tried all the various medication prescribed but appear to be allergic or react to all of them and none take you pain away. I don't know what to do next, seem to go from pillar to post.
I had an xray done about a year ago as, (because I was involved in a car accident 3 months prior to the attack of shingles) it was thought the pain could be due to something else. It wasn't but the radiologist said that if I had a certain nerve 'snipped' in my back (left hand side) all should be well. Has anyone else heard of this. My doctor said they didn't have anything in writing from the radiologist to confirm this. I really feel as if nobody is much bothered about this sort of pain.
I do know for a fact that having nerve ends burnt off can stop pain. I had this done (privately when I was covered through work) in my neck which stopped the migraines I had suffered badly with for years. I no longer have private medical cover unfortunately.
I can can only sympathise with others who have suffered following shingles. The pain is HORRIFIC but the advice seems to be to take pill after pill and then If that doesn't dork have another ruddy pill.
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I am just recovering from shingles. I have never felt so ill in all my life or been so tired. I have been left with intermittent pain in my hairline where the blisters were and also in my eye. It seems to come on every afternoon and last all night. My eye waters and I have developed floaters and blurred vision. I have tried paracetamol which helps with the pain but not with the sensitivity to light and blurred vision.I go to bed with a cold damp flannel but it doesn't seem to help much, my scalp also itches unbearably.
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My 88 year old mother who has dementia has developed odd sensations and pain in her upper back. She's had two bouts of extreme pain which moved around but were in a similar area of her back - lower ribs on left side. The pain lasted only for a day each time and each time I saw what looked like sweat pimples but they were on her upper chest at the front - ie a different place. Now she often feels cold and shivery (when in fact she is hot) and puts more layers on to the point where she starts sweating, feels pain in her upper back and gets very anxious when she gets it (most days in the afternoon/evening). She gets night sweats. Does this sound as if it could be left over from shingles?
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Has anyone else had this happen to them? I'm waiting for an endoscopy so I might find out what's going on eventually!
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Just wondering if people with depression find talking about it makes you feel worse. On Saturday my boyfriend had his worst ever day with depression. We spent most of it in hospital waiting for him to be seen. He lost his wife last year which set it off but til Saturday he had seemed fine. I told him to think about what he wants from us as in would he rather just be friends for now. This is looking more and more likely the more I think of it and the changes in what he's saying to me. This Saturday we plan to meet and talk about what he wants. I've said its going to be down to him what happens. I am going to listen to what he says but then I feel I do need to tell him how I feel. I think we probably will agree on everything like he needs to sort his depression out then think about a relationship when he's ready. I would like to talk about Saturday and be honest about how it was for me as he has said if I feel it's getting too much just tell him. I don't feel that it's getting too much at all right now but based on Saturday alone if that happened more often I honestly have no idea how I would cope. I do want to be there for him but with how he was on Saturday I don't know how much of him being like that I could deal with. That may sound selfish and I know he couldn't help it but I felt nothing I could do or say could help and after trying to cuddle him a few hours for him to blank me I was starting to give in trying.
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