Postherpetic Neuralgia Survival Skills
Sep 1, 2014
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'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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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 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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I broke my Tib and Fib near the ankle on January 18 (two days before this post) and it's been ok. When it itches I use a blow dryer in cool setting to blow it, and apply ice to it every few hours. I'm trying to keep it above my heart, but it is very uncomfortable and I can't find a proper position. It's a little tight around my ankle, but it's manageable. Any tips for me guys?
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I was recently in a coma and was given a 15 percent chance to live just how serious is that.
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What are the survival rates for ovarian cancer?This discussion is related to Ovarian Cancer.
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I have been recently diagnosed with TN I'm 27yrs old I have been taking tegretol 600mg and I have been referred to see a consultant and awaiting a MRI scan has anyone had the scan or went private for treatment? Waiting list ATM is 39 weeks. Having really bad flare ups and constantly exhausted have now changed to palexia twice a day and feel horrific both pain and weakness. Only been taking this a few days has anyone else taking this tablet before?
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Has anyone tried the laser treatment for trigeminal neuralgia. I have read that people have great success with it. As I understand it the laser is low level and non invasive.
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For nearly two years now, I have had a severe pressure pain at the base of my skull on the right hand side of my head. It has steadily got worse, often flaring up whilst I have been in the gym, but now, like tonight, it has been throbbing/stabbing so badly that I am unable to sleep.
I have been back and forth to my doctor about 5 times so far and every time she has sent me for a blood test and concluded that I have low iron and to take supplements for that. My whole family are susceptible to iron deficiencies and I am a regular blood donor who has never been turned away, so I am confident low iron has nothing to do with it.
I was getting quite frightened that I could possible have an AVM in my head, or something putting pressure on my skull, so after much persuasion, my doctor referred me for a CT scan that came up 'normal'. She called me and suggested that I keep taking iron tablets as this must be the cause of my 'headaches'.
I do NOT have a 'headache'!! I keep reiterating to my doctor that it is a constant pressure in that area, sometimes my head even hurts to touch, but she is insistent that it is a headache. Occasionally I get a pain behind my right eye and over the top of my head, so I am getting a lot better at wearing my glasses any time that I am reading or studying. I have looked online at my symptoms, and I think it could possibly be occipital neuralgia - does anyone have symptoms like this? I have looked on other threads but there seem to be a lot of associated physical symptoms, for me it is just the head pain.
If you would believe it, my doctor actually asked me if I wear my hair up at night as she thought having my hair in a loose ponytail could be causing the pain. When I said I wanted a scan, she told me she would 'have to make something up' that sounded worse than what I told her because if she sends a person for a scan and it's not serious, she gets a slap on the wrist, as scans are expensive and she can only request three per month.
I am going back this week to discuss occipital neuralgia with her (let's hope she knows what it is!) and to insist on maybe an alternative treatment to injections or meds - maybe acupuncture?
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initial trigeminal neuralgia in my case may have been triggered by a gum infection.
I have suffered migraines since the age of eight. Is this condition related, a correlation between the two ?
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Last August 2015, I drank 2 glasses of wine two hours after having taken Carbamazepine - I'd mixed the two before, coincidentally, not deliberately, of course! The result was that I had 2 seizures, passed out, vomited, bit my tongue and wet myself - the full works! I have only just been given the 'all clear', after waiting over 6 months for an MRI scan and EEG to confirm that I have no permanent brain damage or possible tendencies towards epilepsy!
So, if you are taking this drug - usually the 'drug of choice' for TN, be warned! Don't drink! You may have been fine so far, but so was I and then.....
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Trigeminal Neuralgia :: anyone tried craniosacral therapy?
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On a curious note, how many here dx with MS have also experienced Trigeminal Neuralgia as well? Over the past few weeks, my numbness, tingling, and intermittent shock-like sensations in hands and feet have increased. This along with the relentless chronic fatigue. Simultaneously, I've had left side jaw pain, numbness and tingling on left side along with a few additional symptoms that an ER doctor suspected might be TN.
He suggested I schedule an appointment with a neurologist! With my years of historical symptoms, my efforts with various neurologists, a plethora of MRIS ..... I'm getting a little frustrated when pointed back in the direction of neurology when an explanation after these evaluations cannot be provided.
I'm truly beginning to wonder if something was missed or simply not visible on my MRIS. My suspicions are based on physical debilitating symptoms that I believe other non neuro MD specialists are also pointing in that direction.
It's very frustrating as I can imagine many have faced here. I realize neurologists maintain a certain criteria but if numerous physicians continue to point in the direction of neurology, when I've navigated that path in depth void of answers ....what is one to do?
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I have had horrible migraines for 10+ years which have become chronic daily headaches, manageable, but daily. A year ago I started having horrible pains at the base of my skull on the right side, some days it is a horrible stabbing pain, some days it is just a dull ache, but it is always there. I saw my neurologist in May about the pain since it just would not go away, she really had no ideas for me, she thought it might be a pinched nerve but said she really didn't know, she started me on nortriptyline, after being on the nortriptyline for 2 months and no change, she switched me to gabapentin, I am now taking 1200 mg 3 times a day. Some days I notice a difference, other days no change at all. My Neurologist said to stay on it and it should be helping. About 3 months ago the same type of pain started on the left side of my neck, about 1.5 inches below the base of my skull, closer to the middle by the spinal cord than the outside of the neck, it felt like a muscle knot that wouldn't go away, for the first few weeks, thinking it was a muscle knot, I was trying everything to get the knot to go away, after no relief with heat, massage, ice, I saw my neurologist and basically demanded that we get an MRI to see what was going on, she said she didn't think that was necessary, but ordered it anyway. She said my MRI looked totally fine and that i should still stay on the gabapentin, but no more help than that. After that I decided to find a different doctor. I started seeing a physiatrist, specializing in neurologic issues. My first appointment with him was fantastic, right away he said from everything i am describing i have occipital neuralgia. He explained what it was, and that it is a tricky thing to get under control, and he really couldn't say what is causing it. He said that the gabapentin is what he would prescribe, and it probably is helping, just not taking the pain away totally. He did prescribe a cream to apply to my neck, that he said he has great results with. He said he likes to try this first before doing any injections. It is a special compound cream that is specially made at a pharmacy he uses, its a mix of baclofen, gabapentin, ketorolac, and lidocaine. Its hard to tell if the cream is working, kind of like the gabapentin, sometimes it feels great, other times the pain is the same...
My true issue and reason for posting is, I have had a bad headache on the right side of my head, it moves from the right base of my neck, around my ear to my front temple area. Throughout the day it is in a different spot and I can pinpoint exactly where it is, it feels like someone is stabbing a knife right in that area, but it lasts for hours, throughout the day it does get a little "better", but i can always feel it, when it gets "better" it just feels like a massive pressure in that area. I have been a headache sufferer for as long as i can remember, but this headache is different than any headache I've ever had, and it going on day 19. I have tried everything; my many different headache medications (including an injection i give myself), I've taken a dose pack of steroids along with some anti nausea medication my neurologist gave me, i have gone to get a DHE treatment from my neurologist, i have gotten a toradol shot, and pretty much anything else i could think of, and nothing is kicking this headache. After doing lots and lots of online research, it leads me to believe that this is related to my occipital neuralgia, not a "normal" headache. Has anyone has a headache like this before? Do you think it is related to the occipital neuralgia, or something else? Does anyone have any ideas to make it go away. Also, if anyone has any tips on dealing/treating neck pain from occipital neuralgia.
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Ever since I've contracted HSV2 my life has been a living hell! I've been having sharp pains all over my body , leg pains, itching sensation all over my body, and last but not least pains in the back of my head and neck which sometimes radiates to my scalp. can herpes cause this to happen? If so is it life threatening or deadly?
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