What can be done to mitigate the effects of shingles?
September 5, 2015 12:06 PM Subscribe
A delay in a correct diagnosis led to missing the 72-hour window for antivirals. Eye and face affected in a woman in her late 60s, who got mixed advice.
She recognized symptoms as shingles on Monday, and was told by GP they were "spider bites". At that time, there was one 1.5" diameter irregular, pinkish patch on her left temple, and a smaller one on the left side of her forehead; swollen lymph nodes and pain along the left side of the face; and severe fatigue (and "heaviness" in the legs - though that had been going on for the past week and a half).
She didn't feel right (and has no known allergy to spiders or insects; there are no poisonous spiders around), so returned to the clinic on Wednesday; another doctor there also dismissed symptoms.
A nurse practitioner figured it out on Friday morning, by which time facial symptoms had spread to her upper eyelid (which is swollen and drooping), brow, bridge of the nose, and scalp - nothing on the torso - and began experiencing pain (4-6/10) running from her eye up to the top of her head.
The NP gave her generic famciclovir, and advised going to the ER if eye symptoms worsened. They did (more swelling); ER doc said the antiviral was useless at this point given it's past the window of efficacy. He wasn't concerned about the eye, because the cornea is unaffected; asked what to watch for in terms of symptoms, said "you'll know" and also that it was normal for the eye area to flare up intermittently. He said the 5th cranial nerve was affected.
Today there was new swelling under the eye (lower lid).
My concerns: long-term vision damage, pain that might increase later, permanent neuralgia, and stroke*.
- Is the famciclovir useless now?
- What else can help reduce discomfort or pain? She is taking Advil, not really working now, has Benadryl on hand. I asked about anticonvulsants at the ER, doc said those are only used in extreme circumstances. Tried patches with topical lidocaine for skin pain, but they were too big (cutting them led to the lidocaine dripping in her eye). Calamine and ice for skin.
- Tried light gauze with medical tape to cover patches, but the adhesive is irritating - any suggestions on small facial bandages with non-irritating adhesive?
- What can be done to mitigate the possibility of permanent nerve damage or blindness or stroke? What are the odds of any of those happening?
- What are signs she should further investigate the eye ("you'll know" is hard to interpret)? Again, the lower lid is swelling today - normal?
- How should she follow up with care? Go back to the clinic where 2/2 doctors missed the diagnosis in the first place, and an NP gave her drugs that probably won't work? It's not a walk-in, either, it's an actual practice. Ontario, Canada. She's pretty annoyed and I don't blame her.
- What can be done to prevent scarring? Is the eyelid droop temporary? I think it might be that way from the swelling vs. the nerve, but it's hard to say.
- I cleaned all hard surfaces and things she'd touch (doorknobs etc) with a disinfectant. What else needs attention for disinfection? Not sure what to do about the bathrooms - disinfect top to bottom daily? Keep towels etc. separate and change them after every use?
- She's washing hands often - worth using gloves to prevent reinoculation?
- Also, I'm staying with her for a few days. I had chicken pox as a toddler, am I immune?
- How can I get her to relax?*
*She's taken meds for high blood pressure since age 42 (stressful marriage), and is under a significant amount of stress right now, which I'm sure triggered this - two close family members recently became suddenly and very ill at the same time, and both have poor prognoses. The next 1-2 years are guaranteed to be rough. Generally upbeat and cheerful disposition, but also a type A worrier/heavy emotional labourer with catastrophizing tendencies who does not known how to relax (work and cleaning are relaxing, apparently) and hasn't wanted or felt able to even watch a film or go for a walk since getting the bad news re family. I have been totally ineffective in persuading her to try to relax even sometimes.
She recognized symptoms as shingles on Monday, and was told by GP they were "spider bites". At that time, there was one 1.5" diameter irregular, pinkish patch on her left temple, and a smaller one on the left side of her forehead; swollen lymph nodes and pain along the left side of the face; and severe fatigue (and "heaviness" in the legs - though that had been going on for the past week and a half).
She didn't feel right (and has no known allergy to spiders or insects; there are no poisonous spiders around), so returned to the clinic on Wednesday; another doctor there also dismissed symptoms.
A nurse practitioner figured it out on Friday morning, by which time facial symptoms had spread to her upper eyelid (which is swollen and drooping), brow, bridge of the nose, and scalp - nothing on the torso - and began experiencing pain (4-6/10) running from her eye up to the top of her head.
The NP gave her generic famciclovir, and advised going to the ER if eye symptoms worsened. They did (more swelling); ER doc said the antiviral was useless at this point given it's past the window of efficacy. He wasn't concerned about the eye, because the cornea is unaffected; asked what to watch for in terms of symptoms, said "you'll know" and also that it was normal for the eye area to flare up intermittently. He said the 5th cranial nerve was affected.
Today there was new swelling under the eye (lower lid).
My concerns: long-term vision damage, pain that might increase later, permanent neuralgia, and stroke*.
- Is the famciclovir useless now?
- What else can help reduce discomfort or pain? She is taking Advil, not really working now, has Benadryl on hand. I asked about anticonvulsants at the ER, doc said those are only used in extreme circumstances. Tried patches with topical lidocaine for skin pain, but they were too big (cutting them led to the lidocaine dripping in her eye). Calamine and ice for skin.
- Tried light gauze with medical tape to cover patches, but the adhesive is irritating - any suggestions on small facial bandages with non-irritating adhesive?
- What can be done to mitigate the possibility of permanent nerve damage or blindness or stroke? What are the odds of any of those happening?
- What are signs she should further investigate the eye ("you'll know" is hard to interpret)? Again, the lower lid is swelling today - normal?
- How should she follow up with care? Go back to the clinic where 2/2 doctors missed the diagnosis in the first place, and an NP gave her drugs that probably won't work? It's not a walk-in, either, it's an actual practice. Ontario, Canada. She's pretty annoyed and I don't blame her.
- What can be done to prevent scarring? Is the eyelid droop temporary? I think it might be that way from the swelling vs. the nerve, but it's hard to say.
- I cleaned all hard surfaces and things she'd touch (doorknobs etc) with a disinfectant. What else needs attention for disinfection? Not sure what to do about the bathrooms - disinfect top to bottom daily? Keep towels etc. separate and change them after every use?
- She's washing hands often - worth using gloves to prevent reinoculation?
- Also, I'm staying with her for a few days. I had chicken pox as a toddler, am I immune?
- How can I get her to relax?*
*She's taken meds for high blood pressure since age 42 (stressful marriage), and is under a significant amount of stress right now, which I'm sure triggered this - two close family members recently became suddenly and very ill at the same time, and both have poor prognoses. The next 1-2 years are guaranteed to be rough. Generally upbeat and cheerful disposition, but also a type A worrier/heavy emotional labourer with catastrophizing tendencies who does not known how to relax (work and cleaning are relaxing, apparently) and hasn't wanted or felt able to even watch a film or go for a walk since getting the bad news re family. I have been totally ineffective in persuading her to try to relax even sometimes.
Best answer: Ditto-ing the nerve pain recommendation from PorcineWithMe. Shingles is excrutiatingly painful because it affects the pain nerves directly. There is no Medal of Honor for enduring that pain even 1% more than you have to, and there are many positive effects to eliminating the pain as much as possible.
Do what you need to get the pain control she needs. Do it ASAP, like within the next day at longest. Pain is worst at onset and there is no reason to put up with it.
I don't know anything specific about it, but Gabapentin (Neurontin) as recommended above sounds worth trying. I just got a fairly generic pain reliever (maybe hydrocodone or vicodin or the like) which wasn't great but better than nothing (MUCH better than nothing).
Your patient is likely to have a week or two (?) of fairly intense pain and then several weeks (months?) of lower levels of pain. Medicate both degrees of pain as appropriate.
FWIW the children in our household all ended up with chicken pox as a result of my shingles. That is your primary infection danger. If you are an adult who has already had chicken pox or the chicken pox vaccine, exposure to the chicken pox virus now is actually beneficial as it will re-invigorate your own immune reaction to the virus and help lower your own chances of coming down with shingles later on. Same goes for any other adults in close contact with the patient.
FYI, one potential contributing cause of shingles in adults is the chicken pox vaccine increasingly given to children. Result is that adults tend to not be re-exposed to chicken pox a few times over their lifetime, re-energizing their own immune response to the virus. Thus their immune system suppression of the chicken pox virus flags, allowing it to flare up in the form of shingles.
IMPORTANT: Adults who have not had chicken pox (or the chicken pox vaccine) have a terrible time with adult-onset cases of chicken pox. Keep your shingles patient *completely* out of contact of any such adults. If such a person lives in the household with the shingles patient or is in daily contact, this person is pretty much assured of coming down with chicken pox. Personally if I had such a non-chicken-pox-exposed adult in the patient's household, I would figure out how to move that person out of the household for maybe 4-6 weeks. (Also get them chicken pox vaccine ASAP.)
posted by flug at 1:19 PM on September 5, 2015 [2 favorites]
Do what you need to get the pain control she needs. Do it ASAP, like within the next day at longest. Pain is worst at onset and there is no reason to put up with it.
I don't know anything specific about it, but Gabapentin (Neurontin) as recommended above sounds worth trying. I just got a fairly generic pain reliever (maybe hydrocodone or vicodin or the like) which wasn't great but better than nothing (MUCH better than nothing).
Your patient is likely to have a week or two (?) of fairly intense pain and then several weeks (months?) of lower levels of pain. Medicate both degrees of pain as appropriate.
FWIW the children in our household all ended up with chicken pox as a result of my shingles. That is your primary infection danger. If you are an adult who has already had chicken pox or the chicken pox vaccine, exposure to the chicken pox virus now is actually beneficial as it will re-invigorate your own immune reaction to the virus and help lower your own chances of coming down with shingles later on. Same goes for any other adults in close contact with the patient.
FYI, one potential contributing cause of shingles in adults is the chicken pox vaccine increasingly given to children. Result is that adults tend to not be re-exposed to chicken pox a few times over their lifetime, re-energizing their own immune response to the virus. Thus their immune system suppression of the chicken pox virus flags, allowing it to flare up in the form of shingles.
IMPORTANT: Adults who have not had chicken pox (or the chicken pox vaccine) have a terrible time with adult-onset cases of chicken pox. Keep your shingles patient *completely* out of contact of any such adults. If such a person lives in the household with the shingles patient or is in daily contact, this person is pretty much assured of coming down with chicken pox. Personally if I had such a non-chicken-pox-exposed adult in the patient's household, I would figure out how to move that person out of the household for maybe 4-6 weeks. (Also get them chicken pox vaccine ASAP.)
posted by flug at 1:19 PM on September 5, 2015 [2 favorites]
Best answer: I had this a couple of years ago (at 34). Mine was primarily in the trigeminal nerve, coming down from the top of my scalp and around my eye and brow, but I don't think I had actual eyelid swelling. It was caught earlyish but probably not anywhere close to 72 hours... I was feeling unwell for about a week and only figured things out once the blistering got down to the eye. The antivirals helped, and it's my understanding that they will help stop the spread of blistering as long as that process is active. I had no scarring at all, as the blisters were fairly shallow.
It does seem to me that they are being a bit dismissive about the eye involvement, especially in saying the antivirals were useless. My doctors (from a doc in the box type of place) were not panicky, but it was clear that the antivirals were more important in my case because of it being around the eye. I'd consult an opthamologist about the eyelids, especially if there is any additional blistering spreading towards the eye. That was what I was told very specifically to watch out for.
You don't catch shingles from other people - the blisters contain the chicken pox virus. So any disinfection would be in order to protect those who are vulnerable to chicken pox. The unvaccinated, very young children, pregnant women, immunocompromised people. Other than that it wouldn't be a major concern, and definitely zero concern to the patient herself. I had a 2.5 and 5 year old at the time (vaccinated), they were all over me all the time, and no one else got sick. I personally would stop worrying about disinfecting anything and just keep anyone of concern out of the house, but of course that's dependent on her living situation.
I am also a worrier/type A sort, and I'm sure it was partly what got me sick in the first place. I needed about 2 weeks for acute recovery, but did find it relaxing to work during that period with less pressure to produce. Let her figure out what works for her, and try to take away stress points where you can.
I'm pretty sure Benadryl is useless against this kind of pain, except maybe to help with drowsiness. Now that I'm thinking about it, it might be helpful to consider medications to help with sleep, which is one of the worst aspects of the whole thing - it's impossible to rest. It might be easier than finding pain meds that help against the nerve pain, which is hard to touch. I think a new doctor would be a good idea to double check on that and see what can be done, though. I think this is the kind of missed diagnosis and dismissive treatment that you can't come back from. FWIW, when I went in, it was considered an extremely obvious diagnosis, even though I'm not in the high risk 60+ demographic. The one sided pain with lymph node involvement + blistering is very indicative of shingles.
The one weird post sickness pain was that I had some nerve pain (more like zaps) on my upper back on the same side from about the 1 to 3 month point after the initial sickness. I have not had any lingering pain in the face, thankfully. I suspect that's luck/age.
posted by pekala at 1:26 PM on September 5, 2015 [1 favorite]
It does seem to me that they are being a bit dismissive about the eye involvement, especially in saying the antivirals were useless. My doctors (from a doc in the box type of place) were not panicky, but it was clear that the antivirals were more important in my case because of it being around the eye. I'd consult an opthamologist about the eyelids, especially if there is any additional blistering spreading towards the eye. That was what I was told very specifically to watch out for.
You don't catch shingles from other people - the blisters contain the chicken pox virus. So any disinfection would be in order to protect those who are vulnerable to chicken pox. The unvaccinated, very young children, pregnant women, immunocompromised people. Other than that it wouldn't be a major concern, and definitely zero concern to the patient herself. I had a 2.5 and 5 year old at the time (vaccinated), they were all over me all the time, and no one else got sick. I personally would stop worrying about disinfecting anything and just keep anyone of concern out of the house, but of course that's dependent on her living situation.
I am also a worrier/type A sort, and I'm sure it was partly what got me sick in the first place. I needed about 2 weeks for acute recovery, but did find it relaxing to work during that period with less pressure to produce. Let her figure out what works for her, and try to take away stress points where you can.
I'm pretty sure Benadryl is useless against this kind of pain, except maybe to help with drowsiness. Now that I'm thinking about it, it might be helpful to consider medications to help with sleep, which is one of the worst aspects of the whole thing - it's impossible to rest. It might be easier than finding pain meds that help against the nerve pain, which is hard to touch. I think a new doctor would be a good idea to double check on that and see what can be done, though. I think this is the kind of missed diagnosis and dismissive treatment that you can't come back from. FWIW, when I went in, it was considered an extremely obvious diagnosis, even though I'm not in the high risk 60+ demographic. The one sided pain with lymph node involvement + blistering is very indicative of shingles.
The one weird post sickness pain was that I had some nerve pain (more like zaps) on my upper back on the same side from about the 1 to 3 month point after the initial sickness. I have not had any lingering pain in the face, thankfully. I suspect that's luck/age.
posted by pekala at 1:26 PM on September 5, 2015 [1 favorite]
Best answer: Shingles is a tough two weeks of hell. One important part of dealing with it is knowing that is nerve hijacking - the pain is there but it is not due to any sort of injury. It helped me a lot to just keep telling myself that it was a nerve infection - I thought of it as a constantly ringing doorbell with nobody actually at the door.
Pain management is actually very important for shingles as there is the possibility of lingering pain sensations post infection because of inadequate pain management.
I rode it out with ibuprofin and set timers so I could be sure and take as much as I could without going over the safe limits but mine was across my chest which is one of the least painful areas for it (phew! Not so bad other than starting out pre-recognition with an awkwardly very itchy nipple that I subconsciously scratched in public a few times before catching myself).
posted by srboisvert at 2:20 PM on September 5, 2015 [1 favorite]
Pain management is actually very important for shingles as there is the possibility of lingering pain sensations post infection because of inadequate pain management.
I rode it out with ibuprofin and set timers so I could be sure and take as much as I could without going over the safe limits but mine was across my chest which is one of the least painful areas for it (phew! Not so bad other than starting out pre-recognition with an awkwardly very itchy nipple that I subconsciously scratched in public a few times before catching myself).
posted by srboisvert at 2:20 PM on September 5, 2015 [1 favorite]
Response by poster: Thanks so much, everyone. All your answers are so helpful.
It's a long weekend - anyone have ideas about where to go in the GTA for pain medication, or for ophthalmological care (if required - also when is that an emergency?)? I wouldn't think many ERs have an ophthalmologist on staff..
posted by cotton dress sock at 2:44 PM on September 5, 2015
It's a long weekend - anyone have ideas about where to go in the GTA for pain medication, or for ophthalmological care (if required - also when is that an emergency?)? I wouldn't think many ERs have an ophthalmologist on staff..
posted by cotton dress sock at 2:44 PM on September 5, 2015
Best answer: I'm pretty sure Mt. Sinai has one on call in their ER, and St. Mike's might too; both have handled opthamological emergencies in my family. I really like the Mt. Sinai ER although like all GTA hospital sometimes the follow up isn't great. I have no real insight into shingles unfortunately.
posted by warriorqueen at 5:20 PM on September 5, 2015 [1 favorite]
posted by warriorqueen at 5:20 PM on September 5, 2015 [1 favorite]
Best answer: Since you mention stroke,....
Recent studies show a significant increase of stroke in the year following a shingles outbreak. The research results have been adjusted for age (most shingles sufferers are over 50) and show that the increased stroke risk does NOT depend on age. When I mentioned this to my GP, she was dismissive - the studies are fairly new and it seems most docs have no idea this is a thing.
I mention this because she needs to keep a handle on her risk factors for stroke- cholesterol, high blood pressure, obesity, and lack of exercise. Perhaps once this acute phase has passed you can mention this to her.
posted by PorcineWithMe at 6:31 PM on September 5, 2015 [1 favorite]
Recent studies show a significant increase of stroke in the year following a shingles outbreak. The research results have been adjusted for age (most shingles sufferers are over 50) and show that the increased stroke risk does NOT depend on age. When I mentioned this to my GP, she was dismissive - the studies are fairly new and it seems most docs have no idea this is a thing.
I mention this because she needs to keep a handle on her risk factors for stroke- cholesterol, high blood pressure, obesity, and lack of exercise. Perhaps once this acute phase has passed you can mention this to her.
posted by PorcineWithMe at 6:31 PM on September 5, 2015 [1 favorite]
Response by poster: Thank you for sharing this, PorcineWithMe. I'll definitely let her know when she's feeling better. (I think the acute stress of recent events has been really hard on her, and she had a good long streak of it before that ... not sure how to help her in that regard :/ )
We went to another west end hospital, warriorqueen - new blisters appeared on her eyelid, and she had a lot of pain behind her eye - but it's good to know about Mt. Sinai and St. Mike's. (The eye is apparently ok, but they let her go without pain meds, again. I don't know if it's a culture of care thing? Nothing ever seems to go the way American sites like WebMD etc. suggest they might.)
posted by cotton dress sock at 6:57 PM on September 5, 2015
We went to another west end hospital, warriorqueen - new blisters appeared on her eyelid, and she had a lot of pain behind her eye - but it's good to know about Mt. Sinai and St. Mike's. (The eye is apparently ok, but they let her go without pain meds, again. I don't know if it's a culture of care thing? Nothing ever seems to go the way American sites like WebMD etc. suggest they might.)
posted by cotton dress sock at 6:57 PM on September 5, 2015
Best answer: I didn't get my shingles diagnosed for about a week, because I'm stupid and don't go to the doctor until I think I'm about to die. She still wrote me a script for the anti-viral. She said that it was much less effective outside the 3 day window but that she believed it still reduced the duration and intensity of the outbreak and was worth taking. I improved about 3 days after I started the meds; maybe that was when it was going to subside anyhow, but at least one GP thinks you should still take the antiviral.
For me, the most effective pain med was a patch (I think it was lidoderm). That stuff was awesome and I was always annoyed during the interval where I had to do without. I didn't get neurotin, however, so I can't compare the two.
posted by Lame_username at 7:05 PM on September 5, 2015 [1 favorite]
For me, the most effective pain med was a patch (I think it was lidoderm). That stuff was awesome and I was always annoyed during the interval where I had to do without. I didn't get neurotin, however, so I can't compare the two.
posted by Lame_username at 7:05 PM on September 5, 2015 [1 favorite]
Best answer: I had it in the same location. Gabapentin is the standard med for it, but I found the potential side effects worrisome. Medical marijuana was a lifesaver - I'd been quite skeptical about it beforehand, but very much appreciated having it - no side effects at all and highly effective for nerve pain.
posted by judith at 7:18 PM on September 5, 2015 [1 favorite]
posted by judith at 7:18 PM on September 5, 2015 [1 favorite]
Best answer: This ask might interest you as well.
posted by Michele in California at 1:30 PM on September 6, 2015 [1 favorite]
posted by Michele in California at 1:30 PM on September 6, 2015 [1 favorite]
Best answer: My mom had the shingles of the eye/head.
No idea what is was, thinking insect bite.
Coincidentally had doctor's appointment next day.
Diagnosed immediately.
So started on antiviral within 24hours
I have known others where the diagnosis was missed.
It's easy enough. It's not the common belt rash.
My mom got a double dose of the antiviral.
Won't hurt was the GP's opinion.
If I got it , I would use the antiviral no matter how late.
It's very miserable.
and everyone that I know that got shingles absolutely positively recommends the vaccine.
Shingles of the eye is considered to be a medical emergency.
It's not treated in a cavalier fashion.
Consider pain meds. Seriously.
Post herpetic neuralgia is no joke.
Treat pain now to avoid problems later.
posted by yyz at 6:04 PM on September 6, 2015 [1 favorite]
No idea what is was, thinking insect bite.
Coincidentally had doctor's appointment next day.
Diagnosed immediately.
So started on antiviral within 24hours
I have known others where the diagnosis was missed.
It's easy enough. It's not the common belt rash.
My mom got a double dose of the antiviral.
Won't hurt was the GP's opinion.
If I got it , I would use the antiviral no matter how late.
It's very miserable.
and everyone that I know that got shingles absolutely positively recommends the vaccine.
Shingles of the eye is considered to be a medical emergency.
It's not treated in a cavalier fashion.
Consider pain meds. Seriously.
Post herpetic neuralgia is no joke.
Treat pain now to avoid problems later.
posted by yyz at 6:04 PM on September 6, 2015 [1 favorite]
Best answer: A friend's husband had shingles in his optic nerve. This led to a very difficult year of visiting opthalmologists and trying things like steroid eye drops, steroid-impregnated (I think) contact lenses - I know some special treatment , weekly opthalmology visits at two different teaching hospitals, including Will's Eye Hospital in Philadelphia and a consultation at Johns Hopkins in Baltimore. Believe me, no stone was unturned in seeking care.
He was particularly freaked about this because he had very poor baseline vision and he wanted to make sure that if vision damage could possibly be avoided, it would be. The verdict from his is that his vision is a little worse, but not a lot.
This was a miserable 6 to 9 month ordeal. He had opthalmology visits more than once weekly at first, then weekly, then biweekly and so forth. It went on for many, many months. He was completely obsessed with this, andvery fortunately had a job that allowed him as much time off as he needed to keep all these appointments. It is possible that less intense intervention might have worked as well.
posted by citygirl at 7:14 PM on September 6, 2015 [1 favorite]
He was particularly freaked about this because he had very poor baseline vision and he wanted to make sure that if vision damage could possibly be avoided, it would be. The verdict from his is that his vision is a little worse, but not a lot.
This was a miserable 6 to 9 month ordeal. He had opthalmology visits more than once weekly at first, then weekly, then biweekly and so forth. It went on for many, many months. He was completely obsessed with this, andvery fortunately had a job that allowed him as much time off as he needed to keep all these appointments. It is possible that less intense intervention might have worked as well.
posted by citygirl at 7:14 PM on September 6, 2015 [1 favorite]
Best answer: Sorry I wasn't able to get to this question right away. I hope the person in question is feeling better. IANYD, but I can provide some general information about shingles.
- Is the famciclovir useless now?
I generally like to back up doctors when I can, but I don't agree that famciclovir is useless.
Ref: "Several observational studies found antiviral therapy to be capable of reducing zoster pain even when started beyond the traditional 72-hour therapeutic window.[88, 89] Thus, antiviral therapy should be considered for acute zoster treatment regimens, regardless of the time of presentation."
-What else can help reduce discomfort or pain?
Narcotics. Possibly steroids. Or gabapentin. It is used in the more extreme cases but anyone with significant pain could receive it. It isn't high in side effects and it's not habit forming or controlled substance.
- Tried light gauze with medical tape to cover patches, but the adhesive is irritating - any suggestions on small facial bandages with non-irritating adhesive?
The best less irritating alternative is cloth tape, but it doesn't adhere very well, unfortunately. It looks silly, but the easiest way an sometimes be to get a roll of gauze and wrap the entire head, then put a hat or stockinette/cap over it to hold it in place (or tape the gauze to itself.
- What can be done to mitigate the possibility of permanent nerve damage or blindness or stroke? What are the odds of any of those happening?
Antivirals, plus or minus steroids (depending on the patient) can reduce risk of complications from nerve damage in herpes zoster ophthalmicus, which is the fancy medical term for shingles around the eye. Blindness is very unlikely. I'm not aware that stroke is a known complication of zoster. A stroke happens when there is either a blockage in a blood vessel in the brain, or bleeding in the brain. Zoster can affect your brain but as far as I know that would be through encephalitis, which is rare.
- What are signs she should further investigate the eye ("you'll know" is hard to interpret)? Again, the lower lid is swelling today - normal?
She should definitely see an ophthalmologist. Just do it. Hopefully you've done it already.
Yes, eyelid swelling and drooping is typical of herpes zoster ophthalmicus.
- How should she follow up with care? Go back to the clinic where 2/2 doctors missed the diagnosis in the first place, and an NP gave her drugs that probably won't work?
If that clinic is her established primary care clinic, she should follow up there. It's very common for early shingles to be missed, and what the NP did wasn't wrong.
- What can be done to prevent scarring? Is the eyelid droop temporary?
The best thing to prevent scarring for wounds is sun protection until all wounds are completely healed.
- I cleaned all hard surfaces and things she'd touch (doorknobs etc) with a disinfectant. What else needs attention for disinfection? She's washing hands often - worth using gloves to prevent reinoculation? Also, I'm staying with her for a few days. I had chicken pox as a toddler, am I immune?
Don't need to disinfect, no need for gloves, you are safe if your immune system is in working order.
- How can I get her to relax?*
Stop googling shingles... just kidding. Hope that is helpful.
posted by treehorn+bunny at 9:28 PM on September 6, 2015 [2 favorites]
- Is the famciclovir useless now?
I generally like to back up doctors when I can, but I don't agree that famciclovir is useless.
Ref: "Several observational studies found antiviral therapy to be capable of reducing zoster pain even when started beyond the traditional 72-hour therapeutic window.[88, 89] Thus, antiviral therapy should be considered for acute zoster treatment regimens, regardless of the time of presentation."
-What else can help reduce discomfort or pain?
Narcotics. Possibly steroids. Or gabapentin. It is used in the more extreme cases but anyone with significant pain could receive it. It isn't high in side effects and it's not habit forming or controlled substance.
- Tried light gauze with medical tape to cover patches, but the adhesive is irritating - any suggestions on small facial bandages with non-irritating adhesive?
The best less irritating alternative is cloth tape, but it doesn't adhere very well, unfortunately. It looks silly, but the easiest way an sometimes be to get a roll of gauze and wrap the entire head, then put a hat or stockinette/cap over it to hold it in place (or tape the gauze to itself.
- What can be done to mitigate the possibility of permanent nerve damage or blindness or stroke? What are the odds of any of those happening?
Antivirals, plus or minus steroids (depending on the patient) can reduce risk of complications from nerve damage in herpes zoster ophthalmicus, which is the fancy medical term for shingles around the eye. Blindness is very unlikely. I'm not aware that stroke is a known complication of zoster. A stroke happens when there is either a blockage in a blood vessel in the brain, or bleeding in the brain. Zoster can affect your brain but as far as I know that would be through encephalitis, which is rare.
- What are signs she should further investigate the eye ("you'll know" is hard to interpret)? Again, the lower lid is swelling today - normal?
She should definitely see an ophthalmologist. Just do it. Hopefully you've done it already.
Yes, eyelid swelling and drooping is typical of herpes zoster ophthalmicus.
- How should she follow up with care? Go back to the clinic where 2/2 doctors missed the diagnosis in the first place, and an NP gave her drugs that probably won't work?
If that clinic is her established primary care clinic, she should follow up there. It's very common for early shingles to be missed, and what the NP did wasn't wrong.
- What can be done to prevent scarring? Is the eyelid droop temporary?
The best thing to prevent scarring for wounds is sun protection until all wounds are completely healed.
- I cleaned all hard surfaces and things she'd touch (doorknobs etc) with a disinfectant. What else needs attention for disinfection? She's washing hands often - worth using gloves to prevent reinoculation? Also, I'm staying with her for a few days. I had chicken pox as a toddler, am I immune?
Don't need to disinfect, no need for gloves, you are safe if your immune system is in working order.
- How can I get her to relax?*
Stop googling shingles... just kidding. Hope that is helpful.
posted by treehorn+bunny at 9:28 PM on September 6, 2015 [2 favorites]
Best answer: Also, ERs in tertiary care centers (academic hospitals) generally have the ability to consult ophthalmology 24/7. I would usually only consult ophthalmology emergently in the department if there was actual corneal lesions or something going on with the eyeball or vision itself, not just the lids and skin around the eye - for those people I'd send to outpatient office.
posted by treehorn+bunny at 9:32 PM on September 6, 2015 [2 favorites]
posted by treehorn+bunny at 9:32 PM on September 6, 2015 [2 favorites]
Response by poster: Oh, wow. Thank you so much, treehorn+bunny, for taking the time to offer such generous and comprehensive (and reassuring, extremely reassuring!) answers. Very grateful indeed.
She is feeling a bit better, thank you. We'll get her to an ophthalmologist as soon as Labour Day weekend's done.
Thank you again, everyone, overwhelmed by your kindness :)
posted by cotton dress sock at 10:41 PM on September 6, 2015
She is feeling a bit better, thank you. We'll get her to an ophthalmologist as soon as Labour Day weekend's done.
Thank you again, everyone, overwhelmed by your kindness :)
posted by cotton dress sock at 10:41 PM on September 6, 2015
Best answer: Here's info from the Journal of American Medicine on stroke risk:
http://newsatjama.jama.com/2014/04/04/stroke-risk-increased-after-shingles-infection/
posted by PorcineWithMe at 4:56 AM on September 7, 2015 [2 favorites]
http://newsatjama.jama.com/2014/04/04/stroke-risk-increased-after-shingles-infection/
posted by PorcineWithMe at 4:56 AM on September 7, 2015 [2 favorites]
Best answer: Thanks to PorcineWithMe for teaching me something new! I hadn't heard about the studies that support a connection between zoster and stroke, which apparently came out last year. When I read further about it, it appears that all vascular events (including, for example, heart attack) are thought to be increased in the period just after zoster infection, and that's thought to be due to an inflammatory response in the body. Please remember that statistics like "risk is increased by 200%" or "threefold increase in risk" can be very misleading when you're looking at small number (i.e. 6 in 10,000 is a threefold increase in risk from 2 in 10,000). I couldn't find the absolute risk numbers or number needed to treat for antivirals, and I'm not sure if they're been established - anyone who knows, I'd be interested to hear.
As far as I've seen, there doesn't seem to be anything else you can do (aside from the treatment we discussed above, specifically the antivirals) to prevent stroke. But I think it's always a good idea for everyone, not just people with zoster, to review the signs and symptoms of stroke, because many people don't know what stroke symptoms are, and that results in people often missing the best window for treatment, just like with shingles infection.
posted by treehorn+bunny at 8:53 AM on September 7, 2015 [3 favorites]
As far as I've seen, there doesn't seem to be anything else you can do (aside from the treatment we discussed above, specifically the antivirals) to prevent stroke. But I think it's always a good idea for everyone, not just people with zoster, to review the signs and symptoms of stroke, because many people don't know what stroke symptoms are, and that results in people often missing the best window for treatment, just like with shingles infection.
posted by treehorn+bunny at 8:53 AM on September 7, 2015 [3 favorites]
Response by poster: (I wondered whether it might be an idea for her to take a daily aspirin for a couple of months as a prophylactic, as it's apparently been found to reduce risk of ischemic stroke in women [and it sounds like the idea is that there may be a couple of ways this infection might lead to increased clotting]. I then read that daily aspirin may increase risk of hemorrhagic stroke, however. It sounds like it's unlikely that there's an evidence base to use it in this sort of scenario, so probably better not to experiment. AND stopping googling now.)
posted by cotton dress sock at 3:59 PM on September 7, 2015
posted by cotton dress sock at 3:59 PM on September 7, 2015
Definitely stop consulting Dr. Google at this point. I only mentioned the stroke risk so that if she starts showing signs you don't confuse them for signs of shingles. Just work on getting that poor woman some pain control. Good luck!
posted by PorcineWithMe at 5:39 AM on September 8, 2015 [1 favorite]
posted by PorcineWithMe at 5:39 AM on September 8, 2015 [1 favorite]
This thread is closed to new comments.
Shingles is not contagious, but you can get chicken pox from a person with a shingles outbreak IF you are NOT immune and are in close, skin to skin contact. The washing towels precaution is to avoid going anyone else in the house chicken pox. She will not somehow infect her other nerve branches by touching a door handle. Stop stressing about that.
I'd definitely continue taking antivirals even though they were started late. Of course, she won't get the optimal effect, but the risk/reward ratio is pretty low- maybe it will cut her outbreak by a day (trust me, even a day makes a difference).
L-Lysine has been shown to be helpful in reducing the severity of herpes outbreaks. Might be worth a shot.
Gabapentin (Neurontin) for the WIN!!! Reduces nerve pain. SHE SHOULD ABSOLUTELY GO BACK TO HER DOCS AND DEMAND PAIN CONTROL!!!!
My outbreak was on my trunk, so I don't know about the eye involvement, however.... They seem pretty cavalier about the eye involvement. Is there any chance she can see an opthamologist? (Please alert the staff that she has shingles so that the office can appropriately manage her visit.) I think getting firm answers from a medical professional will reduce her stress levels.
There is lots of good info about shingles on the web. Places like WebMD will have clear, concise information that may help put her at ease.
I feel for her- shingles sucks.
posted by PorcineWithMe at 12:48 PM on September 5, 2015 [2 favorites]