Postherpetic Neuralgia After Shingles - Horrific Pain
Apr 16, 2015
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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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 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 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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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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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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For the past couple months I have a sharp pain that comes and goes throughout the day. I live off Motrin just to keep myself sane. I get intense jabs in my jaw, ear, eye area and sometimes my head. Does this sound like TN? I don't really have a trigger or anything. Sometimes the pain is so awful I have to hide under a blanket and just try to take a nap til it passes. Other times (like now) the pain is dull but the jabs are still painful. Anyone experience this?
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I had this unit put in in Dem. 2013 but because of the lead trying to push through the back of my neck it had to be revised in August 2014. Was doing great until January 19, 2016 when the lead again pushed entirely through the skin on back of my neck. Now my insurance company will not approve for me to have another unit put back in. I was free 90% of the time with my unit in and now I am back to having so much pain in this area. It makes it very hard to have any quality of life except to wait around for another horrible burning pain that takes 3 mores days to overcome each time. Has anyone else had their insurance refuse this especially when it worked great?
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I have not officially been diagnosed with Occipital Neuralgia, but I am beginning to think that that is what I have been suffering from. I will be going back to a doctor soon (husband is military and we are currently getting ready to move to a new country...so it will be a few months before I settle and can get to specialist). In the meantime, I wanted some advice from others who deal with this. I am curious if this sounds like ON to you (I know you can't diagnose me...just curious if my story is similar to anyone else's) and what you do for the pain.
I am 25 years old right now. The headaches started when I was about 18 or 19 years old. It started on the right side of my head right at the base of my head and neck. I got them almost everyday. It was just a dull ache. Nothing awful, but definitely annoying enough that I would have to take advil (especially when I had class or work or something). As months went by and the pain continued, I started getting nervous that I had a tumor (I am a pretty big hypochondriac). I went to my doctor and he sent me to get a CT scan. Everything came back normal. The headaches continued. Went to a neurologist and got an MRI. Again everything came back normal. The headaches still continued. Went to physical therapy. Still not much improvement (granted, I don't practice the exercises he taught me very often). At this point, to be honest, I gave up hope. I took advil almost every day and learned to deal with the pain. I assumed it was just tension headaches. The pain has now gotten worse. The headaches are still only that one side of my head, but the pain spreads behind my ear and up to my right eye when it is at its worst. It feels like a deep ache and I constantly want to stretch or crack my neck or something (which doesn't work). I have a "knobble" that I use to massage the area. Applying a lot of pressure on it hurts...but in a good way. It sort of relieves the pain for the time being, but unless I take advil it will usually come right back and it will last for a few hours if I don't do anything.
I am a teacher and I obviously have to be at my best everyday. The pain makes it impossible, which is why I usually give in and take meds even though I KNOW I should not be taking it everyday. If I am just at home and have nothing to do, I try to massage the area and relax until it dies down.
Does this sound like it could be Occipital Neuralgia? Does anyone have any other idea of what it COULD be? I haven't had much help from doctors, so I sort of want to be armed with information the next time I go see one. I am sick of being told it's nothing when I am spending every day in pain.
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I went straight into it so I went from one pill, to another without a break for a period as my doctor suggested and I am 10 days into cerazette and have been bleeding for 8 of these days, I'm very worried as I have read up on it and all I've heard is horrific stories of ladies being on cerazette.
I've now completely convinced myself I'm going to bleed for the rest of my life ( can anyone give me some reassurance on this pill at all? (
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I was diagnosed 10 weeks ago with shingles and unfortunately it was on my head, forehead and around my eye, which was very painful and uncomfortable, My vision is ok but I keep getting a very sore and pink eye, and have been told at the eye clinic that it is dry eye and I now have the same type of drops that I was given weeks ago. Has anyone else experienced sore itchy eyes so long after getting shingles and if so, any idea how long it lasts? my eye gets SO itchy and sometimes I have to rub it which I suppose is just making it worse!! There seems to be nothing i can put on my eyelid to stop the awful itching
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For about two weeks I was experiencing pain on my right side, around my rib area to under my breast bone. It was an odd pain, nothing like I've had before, it felt as though someone punched me really hard. I thought it was just a muscle strain from so much coughing as I had pneumonia, but the pain didn't go away when the cough did, the pain got worse, and it was constant and would not respond to over the counter pain meds. It got to the point I was crying from the pain. All I can describe it as if someone beat the s**t out of me and left me there, or a car ran over my side. I had no burning, no tingling, no rash. It is a scary pain.
Nonetheless I was still diagnosed with shingles, and given antivirals and pain meds. Within a week I felt a lot better, now the pain is mostly gone, thank God.
Shingles also makes you feel lightheaded, faint, weak, unwell in yourself, not right. Before I got the pain I had a few days of feeling really weak and not right and thought I was going to pass out. Funny that as I remember a day before I got Chicken Pox, years ago, I felt really off.
Terrible thing to get. Now fearing getting it again so will look into a vaccine.
Just wanted to post this in case there are any of you who are wondering if its possible to have shingles without the rash. Yes, it is. Not common, but possible. It is also possible for the band of pain to shift, rather than just stay in one place. In my case my pain started on my right side, then went to my left side, same area of my rib/breastbone.
Hope this helps some people - if this is you, go to your doctor, the anti virals really work fast and the pain meds make it bearable. Paracetamol is not enough for this. Neither is co-codamol. You need either a med that dulls the nerve endings, or an opiate.
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I was diagnosed with CS about 12 years ago after having had problems with pain in my shoulder and pins and needles in my hands at night. I was referred to my neurologist in Leeds, (I'd already had discs out at L5/S1 in 1996 which caused me to go numb all below the waist. Had an emergency operation to relieve it, my right leg is still numb.) had an MRI and nerve conduction tests, slight carpal tunnel syndrome was diagnosed. However, I developed awful pain down my left arm and re-referred, another MRI revealed further degeneration showed but he is reluctant to operate. In the meantime, I get horrific migraines lasting 24 hours at a time, radiating from the back of my head to the front, my eyeballs feel like they are literally being pushed out of my skull! I have also noticed a sore area on the bulbous part of my head just at the top of my left ear :? I lose my balance frequently too...is it time I went back to the doctors?
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I'm 17 years old & feel that I have many medical issues & am just reaching out for help in any way, shape or form. I am only going to even explain the tippy top of my issues starting with my brain not quite being all there/ mental illnesses of which I am afraid to get checked out. I will only tell my tale of how I feel I have a condition more than just fainting spells, if I told all of my problems from head to toe, this post would be the length of a book :( with that being said... my apologies in advance if you're one of few to continue on reading for its quite long. My first episode happened when I was only 4. I was sick & my mother had woken me up or I had awoken on my own in the middle of the night to take a dose of medicine. My mom placed me on our round porcelain kitchen table, my legs dangling off the side. She pours some liquid ibuprofen on a spoon, gives it to me then turns around to the sink to wash off the spoon. Within those few moments she says she caught my eyes roll to the back of my head & me falling back onto the table where she caught me. I don't remember exactly if this was around the time of which I went to a Neurologist & got an EEG done I believe? I am pretty sure the results came back as if everything was fine. I don't believe I had any more episodes until I was about 11 or 12 when in Pennsylvania visiting family for the summer. I slept on a couch of my great aunts' house on the second floor. One morning, I suppose my mom & dad & younger sister were already awake & down in the kitchen sitting at the table with my aunt. I sat up quick the second I awoke & heard voices, took a breath & headed for the stairs. As I walked down them, I had a huge headache & felt dizzy thinking I woke up sick as a dog or something. Upon approaching my family, I asked my father at the seat in my abrupt path in advance if I can sit down & that I felt very dizzy. As I voice these words I feel my entire body almost 'drain' I get real clammy then my mom says "Dad! She's as pale as a ghost, her lips are white" my dad then tells me to sit with my head below my knees, this made me feel somewhat better but I heard everyone talking & felt overwhelmed with noise & put my head up & didn't even feel like myself. I stared, pushed through my parents & headed back upstairs because I felt like laying down would make me feel extraordinarily better. I didn't make it up a few steps without losing full vision & falling with my father catching me. He brought me to the kitchen floor & put a cold, wet washcloth on my forehead. I felt somewhat relieved, then heard my mom speaking along the lines of calling 911 & getting an ambulance. This scared me, as I am horrified of needles.. blood.. pain.. the hospital.. etc. So I quick felt fine & was able to speak & objected. The ambulance took so long to arrive, I had already felt almost normal until they wanted the littlest of a finger prick, I felt all dizzy & nauseous all over but nothing happened I don't believe. Since this one, my mother was dead set on the fact that I had seizures; but was never taken to any specific doctors for anything. After age 11, I had more episodes. Each one being different in the overall symptoms, causes, & durations. I've had many a small one where I notice right away & lay down or squat or talk myself out of it. I've had a few that are larger with complete loss of consciousness. One time, I was in the shower & had cut myself shaving. I saw the blood, got scared but knew I had to talk myself out of whatever crazy thoughts I may put in my own head. I couldn't help but think of it though, so I felt my symptoms come along & called for my mom right upon getting dizzy, turned the shower off & got out.. shampoo in my hair & everything. My mom & sis came in & just stared at me. But the more they pointed out the bad things like my lips & whole body being a ghostly white & the cause of why I got so nauseous; the more I got afraid & continued to think of it. I then looked away from them for a moment then looked back at them when my sister, afraid, yelped my name. They both said I just blank stared like I wasn't there. My eyes then rolled after staring & I fell back onto the floor hitting my head on the concrete. My mother said I was shaking but my sister says she didn't see it. I came to after a little, but only my hearing did. The first words I hear were my mom talking about the hospital & 911! After having my hearing for a bit I was able to see my dad next to me with a washcloth pushed against my forehead. I said nooo I'm fine, talked her out of it, quite ironic from the time before. One was a small one that I had in my room by myself. This one was different because I hadn't fully lost consciousness & I was alone. I had just walked from my mothers room talking about an injury I was worried about on my left shin. There was a large bruise with a raised bump on my shin bone (i had hit it on something the day before) My dad told me to go ice it so I got ice & went to my room. I sat on the edge of my bed, my left leg on the bed with ice ontop of my shin & my right leg off the side of the bed. After icing it for a bit, I remember only thinking about my flippin' booboo & heard a ringing in my ears, felt nauseous, dizzy, & my vision blurred a bit. I then screamed "Mom! Mom! Leeeee!" (lee is my little sister) because I thought they were in the living room & could hear me. I felt as if I screamed with full force from the bottom of my soul yet noone heard a thing, not even my sister in law in the nearest room; so maybe no voice even came out. But I don't know because by then, the ringing was so bad it was all I could hear. I began to tremor & shake uncontrollably & fell face first onto my laptop. I didn't lose my vision fully though, I just couldn't hear, say or move anything. I layed there for what felt like 20-30 mins alone with the left side of my face on my computer just staring at the ground. After a fashion, I was able to hear my television due to the ringing slowly subsiding & my tv static-like vision slowly cleared. I talked myself to get up even if I was to run to my moms room & faint again I'd rather be with her. I walk across the house, & am quite positive all I thought of was: what happened, why, oh your leg, ouch, what is it, thinks of the worst, well now you're walking on it. I had felt my symptoms all creep up again on my journey across the house & by the time I was in my parents doorway, I had lost my vision. I got an image of my moms room in my head though from being there for a split second & was able to sit down with not being able to see with my back up against her bed. My little sister said when she saw me randomly appear at moms door that I didn't look like myself & was staring off to the right the entire time. (when in other times, my eyes would roll or just stare straight) during this time on the floor I heard everything but didn't see.. all my family's voices & could hear myself trying to talk myself back to reality. I truly felt like I was dying almost, my brain was there but my body wasn't. I was somehow able to talk myself to a vision where I see my mom chaotic as ever, my sister frantically crying & my dad to my right just as calm as ever standing with his arms crossed yelling at me for not answering my little sister when she asked if I was okay when I came into there room. I felt horrible because I didn't know she had asked anything, as I could not hear & I could not even see her in the room let alone have been able to give an answer verbally anyways. By this time I questioned why my father always seemed fine when these fainting spells happened to me whereas my mother screaming, yelling, making me think of the problem & making it all the more chaotic & worse for me. I thought, my dad has got to have these. If he always knows what to do for me, then he must have had them when he was younger or been around them so that's what I told my mom later that day. She then said she had said something about it to him earlier & he said he used to always get those by himself or before he was about to give blood or something. I knew it had to be hereditary & I know my dad has never went to a doctor or told anyone of it because he is so fearful of the doctor, the results, all what could really be wrong with him. Because I have that extreme fear myself but just as much as I'm scared, I am curious as to what is wrong with me. Scratch that, us. Because I know once I begin this journey, he'll be the one all the history would be linked to & I know once I try to find out all what's wrong with me, they'll need to find out all what's wrong with him as well. The last few were between 12-16. As of today, I'm 17 turning 18 this December. I'm afraid to pursue anything in my life because of this. I haven't got a permit, job, hardly go out anymore & deprive myself of doctors visits I know are necessary. Everyone gets hurt in their lives, & it'd be my dream to one day have children. Now, if I can't even deal with a shot, bruise or cut how am I to deal with a fracture, broken bone or even getting pregnant someday!? I've been doing a lot of research lately because I'm more curious as to how to deal with getting what I have dealt with. There's a lot that I feel I have thats related to some form of syncope possibly? As I mentioned before, my mother thought I had some form of seizures but I don't feel they're that bad, I don't foam at the mouth or anything but I have shook during some. I think it could be Vasovagal Syncope, or situational syncope (due to medical accidents being the main trigger) I also, my mom recently told me which I never knew, have heart issues. Something like a murmur or irregular beat or something like that, she doesn't remember. But I know this is part of it, along with my brain being messed up. I know I think very differently than I should, pretty sure I've got OCD and some kind of anxiety disorder/hypotension? I just really want to know if furthering this unknown investigation would be worth me confronting my worst fears for. Cause I know if I get blood drawn or he littlest test done I'm sure they'll see me passout so maybe it'd all be a good thing but I am so afraid. I just would like any feedback from anyone if possible at this point. I'm fed up with feeling so sick from head to toe inside & out. Has anyone had any experiences like these? Has anyone any advice for me?
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I have just been diagnosed with shingles for the first time. Feels as though I have a boulder in my eye and the pain shooting through my head is excruciating. Have got a few blisters around my eye and am praying my eye sight will not be affected. Am taking Acyclovir, Paracetamol and an anti inflammatory. Have noticed as the day goes on and I take more pills the pain eases. Early mornings are worst and I have to get up and take more pills
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I am a blackout drinker. i can go months without a drink, but all it takes is that one time, that one day, and self awareness and self control are not present. it almost always ends in something horrific, embarrassing and shameful. i spend the entire day after in bed, with my face in the pillow as bits and pieces of the night before begin coming to the surface and sheer panic and anxiety sets in. the " omg, i did it again, have i not learned from last time" .. and then i go into a deeper, darker place of self hatred and deep shame and guilt. this is usually where i say" ok, that is the LAST time!". AND .. it is again, a lie. there is no end to the things i can do while drunk. i can kiss a married man in front of his wife, i can get into the bed of a stranger, i can run in traffic, i can get physical. i am scared and i need help. i'm shocked of who i am, what i am. i don't want to be a bad person anymore. 100 % of bad, is when i drink. i am so disgusted with me. today is day 2 of being sober. the next drink i have will kill me. please help point me in the direction i need to go in because i'm really scared. my children have seen and heard enough, my marriage is over. i can't live this 1 step forward when that drink throws me 2 steps back.
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I am a 20 year old female that has been experiencing pain in the right side of my neck that radiates down my right arm to my fingers for a week or so. This is often accompanied by a burning sensation under my right armpit and down my arm. Today this has been replaced by a tingling sensation on my chest, jaw, arm and occasionally my upper abdomen. This is again all on my right side. I also have a headache. Could this be shingles?
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So nearly two months back my life changed, I used to have average bowel movements every day *3 on average* but I woke up one day and none of this exist anymore, I tried to play it off and wait assuming it was your normal constipation problems, I let it carry on for nearly two weeks before I tried laxatives and for the most part I only got good results from Equate natural Laxatives, enema's didn't work, suppositories didn't work, so I went to the hospital and found out I had shingles, when I got x-rayed for my abdominal pain n such I expected a clear diagnosis or at least some help but I only got subscribed polythene Glycol AKA Miralax, it gave me false hope thinking I just had terrible constipation, the Miralax worked to a degree for a while but it started producing less efficient movements as I used it, now I am not using anything and have very little gas passing through and I sometimes have oddly shaped small bowel movements, they're not complete and I strain for portions in the bathroom. As of now I have very slight abdominal pain that is in waves showing up in my left side and sometimes on my right. Not sure what to think, as embarrassing as it sounds it feels like my sphincter is really tight making it all troubling. I've started trying natural remedies such as oatmeal, water, and peppermint tea to help bowel movements. I don't know what to really do and I'm worried for my health...
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