Postherpetic Neuralgia And Edema
Jan 14, 2016
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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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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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?
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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
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?
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.
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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.
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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My doctor suggested Muro 128 ointment 5% at night following a corneal abrasion (scratch) & corneal swelling with vision blurriness following that. Steroid drops tried but didn't resolve the blurriness. The Muro 128 seemed to clear it up magically. The only thing is, the doc now recommends I use it for 6 months! I have dry eye anyway but wondering why you would use drops which draw fluid out of your cornea for that length of time? Would be interested if anyone else has used Muro 128 on long or short term basis.
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I have had rt thigh, calf and hip edema since 1/14 (8 months). It came on out of nowhere. No injury. Neg for DVT, neg MRI for mass, neg mass on abdominal CT scan. Multiple hypodense, Ill defined nodules were identified on spleen and a few on liver. CT scan of chest identified multiple hilar lymphadenopathy. This prompted bx. Dx: Sarcoidosis. Had 2 unsuccessful rounds of prednisone. Now getting Remicade tx. I feel better overall, but the edema. Has not changed. My sarcoid dr (pulmonologist ) thinks this may be totally unrelated to the sarcoid.
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I'm desperate for an answer. Vascular consult was neg. any clues?
I was originally told this could be a spinal compression issue. I do have a hx of lower back pain/spasms.
Swelling on the top of my foot and on the right outside of my ankle ( on the operated leg) will not go away. I wake up in the morning, its fine but gradually by 3 hours later its swell bad,and if u press it it stays indented. I called my Dr about it,they gave me 7 pills of Lasix for water retention -but it didnt work ( didnt make me pee any more then usual) AND it made me feel weird. Dizzy and just sickish. I called back and they said since my BP is normal to low side that maybe I didn't need the lasix to get a milder over the counter. I got a natural one -from the health food store -BUT STILL. I took the TED hose off a week ago. I lay ice on there and froze a pair of socks that I put on.Nothing is helping apart from laying down at night. I don't have heat pain fever or swelling behind the knee. ANY BODY ELSE dealing with this? I'm 4 weeks since op tomorrow.
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2 years ago I had a piece of steel melted into my eye. I went to the emergency room and they called in an eye specialist. After a dew painstaking hour They got all of the steel removed from my eye. But the specialist tells me i need to see another doctor because it looks like I got glaucoma. So finally I got the nerve to go see the doctor. I don't like to go to doctors. Any how, she said i do have glaucoma after 3 visits to her. Also they had a specialist there at the last visit. They brought a different machine with them. They took a bunch of tests to confirm I have glaucoma and other problems. Macular thickening, leakage of fluid inside my eye, aneurysms, cotton walls. They have appointments scheduled all over the state with specialists now. I am 40 years old. They tested me for diabetes and high blood pressure. All negative. They are not sure why I am having such bad eye problems. Any thought? The eye doctor told me they will start a treatment for the glaucoma in a couple weeks after I see the next specialist.
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So i've been diagnosed with preeclampsia and the past few days i've had swelling in my right ankle and pain all the way up my right leg my blood pressure has been high i have a headache i don't feel right i called l&d they said it sounds like nothing and im worried i don't know what to do im scheduled to be induced next friday but i feel like my drs are just idiots with how they've been jerking me around here lately
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my Daughter aged 9 year is suffering from cord edema due to road accident. she was hit by a bike three months before, and after all the examination her reports are fine but in MRI report the doctors find that :
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There is a long segment T2W hyperintense extradural collection is seen in dorsal aspect of cord extending from D1 to L1 level. There is rupture of ligamentum flavum at D2/D3 level. T2W hyperintensity is also seen at interspinous at D2/D3 level. On T2W and STIR images paraspinal hyperintensity is seen from D2 to D6-7 level.
Prevertebral hyperintensity is seen from C2 to C5 level s/o edema/bleed.
Impression in MRI:-
1. Long segment Spinal Extra Arachnoid CSF collection in dorsal aspect of cord extending from D1 to L1 level causing cord compression leading to cord edema/contusion D3 to D5-6 level.
2. Rupture of ligamentum flavum and interspinous ligament at D2/D3 level.
after the injury she is on bed due to paralysis and loss of sensation below waist. and also suffering from bed sore due to bedridden.
I have consulted so many neurologist but they said the injury will recover itself after long time.
I have had edema throughout my whole body for the last 4 months. My Dr. put me on a diuretic a few weeks ago. It seemed to help for the first couple of weeks, but now I am super swollen again. Why would the edema come back even though I am still taking the diuretic as prescribed? They tested me for autoimmune, which came back negative. They also sent me for an echo of my heart, which came back normal. I have reduced my sodium intake and drink around 75 oz of water a day. I have reduced my coffee intake to only 1 or 2 cups a day and no other caffeine products. What in the world is going on?
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My last back surgery was a T12-L5 fusion to correct scoliosis. I would say it's a failed back surgery because my back is so weak I must use either a cane or walker most of the time. I have constantly had a burning pain in my groin and lower back for which I take oxycodone and use ice to relieve the pain.
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Now the question: for more than a year (the surgery was 2 years ago) I have had swelling with fluid around one of the T12 screws. X-rays were done then and again the last of May and both show the screw has backed out somewhat but is still intact. In fact, the more recent x-ray is exactly like the first one, so it seems it isn't moving. My neurosurgeon said he could remove the screw and cut the rod down if I wanted him to. At the time, I said, "No, not yet." That was a couple months ago. However, the edema is getting larger, moving to the right side of my spine and moving lower. It's also getting almost impossible to get a good seating position because of it.
Sorry to be so long about this, but I'm wondering if any of you have had this problem, and if so, what did you do about it? At the moment, I'm facing a total shoulder replacement surgery in 2 weeks, and then possibly eye surgery after that, so I can't do anything soon, it seems. Just trying to see what my options are.
Does anyone have personal experience of this problem? A 79-year-old friend with vascular dementia has been prescribed a whole series of atypical antipsychotic drugs over the past eight months, all with varying disastrous results. And yes - I know this is an off-label use of this group but they still get prescribed for dementia sufferers all over the western world.
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She's been on mirtazapine 20mg once daily for about five years (with no apparent ill effects) and olanzapine 10 mg once a day for three months. Two months ago she very rapidly - over a few days - developed massive swelling of her left hand, with complete loss of use of the middle, ring and little fingers of that hand. An X-ray was inconclusive, mainly as she couldn't straighten the three affected fingers, and her doctor has been mystified by this ever since. He finally decided it was arthritis but it didn't look much like it to me, given the degree of swelling and deformity, and the speed with which it had come on. Anti-inflammatory drugs have been prescribed, but with minimal effect.
I visit her in her high-security psycho-geriatric unit at least three times a week. Last Tuesday (six days ago) she was still feeding herself perfectly normally with her right hand, once her food had been cut up for her. Three days later, she could no longer hold a spoon, fork or cup. Her right hand isn't swollen but I can clearly see the identical deformity in her last three fingers as in her left hand. All three fingers on both hands are curled up and twisted over each other.
After raising Cain at the home, I've managed to get her an emergency appointment at a rheumatology clinic tomorrow. In preparation for this, I've been doing some research over the weekend (and no, not on Wikipedia) and have discovered peripheral oedema (swelling) is a rare, but known, side-effect of olanzapine. I also found a long paper that had clearly been published in a learned journal on the subject of peripheral oedema with combined mirtazapine and olanzapine use. Unfortunately, it was in Turkish!
Has anyone suffered from this and how quickly did it improve once the olanzapine dosage was reduced? Also, how serious is the rebound psychosis when olanzapine is withdrawn?
She was originally on risperidone, but when that had to be tailed off because it left her with severe Parkinson-like symptoms, it left her way more psychotic than she'd been at the outset, with the result she stabbed another resident in the lovely retirement home she was living in. She's stayed that way ever since, hence the transfer to a grim high-security psychiatric unit, where she'll end her days. She was subsequently put on clozapine for a couple of months, which caused terrible athetotic movements - constant bobbing, weaving movements of head, jaw, tongue, arms and upper trunk - which made her life unbearable. I have to say, however, that when that was gradually withdrawn, I didn't notice any rebound psychosis.
I'm furious with myself for not researching this sooner, as I'm a former nurse, though neuro was my speciality. I'm even more furious with her idiot doctor for prescribing a med that isn't authorised for dementia, then failing to notice she was suffering from a known side-effect. Ditto the nursing staff at the home. When I mentioned this to the head nurse today, she blithely said she'd known all along it was a side-effect of olanzapine - though I suspect she was just covering up her ignorance.
My friend is beside herself, and it breaks my heart to see her like this. She knows there's something wrong, but doesn't understand what it is. She can't feed herself at all now. I tried her with a biscuit this afternoon and she couldn't even hold that. She's already dangerously underweight (BMI 17) and now she's refusing to let the staff feed her, as she's not used to that. I'm the only one who's allowed to feed her, albeit only a few mouthfuls, but I'm 71 myself and can't continue going in twice a day. In the meantime she's screaming and shouting all day and all night in anguish and sheer terror, and attacking everyone who goes near her. She tried to bite my face today.
Sometimes patients who've been on this class of drugs for long periods know much more about them than the professionals, which is why I'm posting here. Is this terrible condition likely to be a result of olanzapine (and possibly mirtazapine)? And can we expect severe rebound psychosis if her doctor tails it off? (Always assuming he even agrees to do that.) Also, does anyone have any experience of other recently-developed anti-psychotics that don't cause appalling side-effects of one kind or another? Though I have to say, from my own nursing experience, that I suspect there's no such animal.
After 2 weeks from the surgery I developed Central Macular Edema, it manifested itself as a round gray spot on my field of vision and could not read also with the glasses because everything was blurred also because my right eye has still the cataract. The ophthalmologist prescribed me Acular to take together with M for another 2 months and asked me to go back for check up at the beginning of April. I was forgetting: last year I was found to have a slight macular degeneration, the dry type and she said not to worry. I would like to know from other people who had the same problem as mine. Is it likely that after 2 months I could be clear of it? Also anyone can tell me how long they have to wait before taking a flight abroad?
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I had retinal detachment in my right eye in Sept. 2014. Required 2 interventions to get it settled, the last being scleral buckle and vitrectomy. Spent five weeks in face down position. By Dec. 2014 I had cystoid macular edema (CME)? I also developed a cataract, which was expected. Cataract surgery May, 2015. Yag laser Aug 2015. Have been prescribed various eye drops over these many months. Currently on Acuvail 2 x per day. STILL have CME. May end up having surgery for this....Vision slowly worsening...wavy, less intense colours, etc. But my question concerns the fact that my right eye is sore most of the time. Usually just annoying but sometimes quite uncomfortable. Anyone else have this? Anything that can help this? Anyone else have CME lasting well over a year? Thanks !
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Is there any correlation between PMA and Macula Edema, my hands become very swollen and
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I have a mild episode of PMA after having an eye injection of Lucentis for macular edema.