Question for those who have had shingles.

Alisande

Well, I made the decision not to get the newer shingles vaccine(s), and now I have shingles. I was actually relieved to get the diagnosis, nasty as it is, because it came after a week of awful nerve pain from my neck down my right arm, leaving me unable to sleep more than two hours at a time (I can see why sleep deprivation is used as an instrument of torture), and I was afraid no one would be able to figure out the cause. Oh, and that same week I got three tick bites.

Anyway, the blisters are on the back of my head. Fresh aloe vera gel really helps with the pain and itch, but I'm wondering if I should wash my hair. I've read that unscented soap should be used, but it's not clear whether washing is beneficial. I wouldn't mind wearing a cheap shower cap instead of washing it if the water isn't good for the blisters.

Since I can't see the blisters, I don't know their specific location. So I've been using the aloe all over the right side. Aloe vera turns yellow when it dries, and I'm sure my hair looks enchanting at this point. But that doesn't matter, as I'm not inclined to go anywhere right now.

I read that lemon balm is excellent for shingles. Fortunately, I have it growing all over the place, so I've been drinking lots of lemon balm tea. I also ordered a lemon balm ointment said to be good for the blisters, but it's oily and I like the aloe better.

Care to share your shingles experiences (with tips if you have them, please)? Thanks!

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Anglophilia

It's too bad you didn't see your physician immediately as you could have been given the anti-viral, acyclovir. The difference it makes is profound! I have had shingles twice: first time I was 13 (that's 62 years ago!) and the 2bd time was 19 years ago. Yes, I HAVE had both shingles shots as I do not EVER want to have shingles again.


Have you seen a doctor? If not, you should. And he's the one you should be asking all these questions.

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schoolhouse_gwagain

Not had them personally (got both shots), but just want to say I'm sorry you came down with those darn things. Hopefully someone can give you some helpful advice.

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Alisande

Thank you, Schoolhouse.

Lighten up, Anglophilia. I did see my doctor immediately--or at least his stand-in, as he was away. I told her the unremitting nerve pain reminded me of the shingles I had 9 years ago, but she didn't think it was shingles. She prescribed doxycycline for the tick bites. Then when the gentle water flow from my "rainfall" shower head actually hurt my head, I went back to the doctor. This time she found the blisters. And prescribed an anti-viral. And gabapentin.

As for "all these questions," I believe I asked only one: Should I wash my hair?

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mdln

Not washing hair increases risk of infection of skin lesions. Just like those with lesions on their body should still bathe/shower.

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maifleur01

If you do not wash your hair the stuff will dry on it and make the hair stick together. I would suggest first rinsing your head with slightly warm water. Any open blisters may sting so be ready for that. If you feel no pain I would continue rinsing the gunk out of your hair. Be aware that the liquid from the blisters probably contain the virus and any towels, bath mats, wash cloths should be quickly washed and washed separately from the rest of your clothing. Soap with open blisters as many who have had bad sunburns can tell you will sting which is why the suggestion of just rinsing.

I have not had shingles but my husband did and the advice to keep and wash the stuff separately is what we were told.

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Alisande

Good advice, Mdln and Maifleur. Thank you.

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Anglophilia

You said you had had pain for a week before seeing a doctor. The anti-virals work far better if started within 48 hours of symptoms. I, too, was first diagnosed with Lyme Disease the 2nd time I had shingles - had the "bulls-eye" or what we thought was one. I was given Doxycycline, too. When I was worse in 12 hours, I called them back and they had me come in and looked again, and diagnosed it as shingles. I then started the anti-viral. Boy, what a difference from age 13 all those years before. I still have some peripheral nerve pain from that bought, all those years ago.

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Alisande

I don't have the patience to quibble with you, Anglophilia, but my original post said the diagnosis came after a week of nerve pain. Nowhere did I say I didn't see a doctor.

My own doctor would have prescribed an anti-viral during that first week--which is what he did nine years ago when I had shingles. I never did get the blisters that time.

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Lucille

No tips but the pain from my shingles lasted for years.

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bpath Oh Sophie

When I had shingles a few years ago, had it at my midsection, my doctor said nothing about not showering. It felt good to shower. I don’t know why you couldn’t shampoo. Hope you’re feeling better soon!

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myrica4

I was going to say gabapentin, but see you already have an Rx :)

I had shingles 10 years ago that went undiagnosed in the ER (it happened on a weekend of course). Severe pain but the drs could find nothing wrong so they sent me home, at first they thought it was a collapsed lung because of the stabbing front to back. I went back to the ER the next day still in severe pain, a dr then figured it out & did the antiviral treatment.


I‘ve never had the vaccine, was told there was a shortage & it was reserved for age 50+.

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ravencajun Zone 8b TX

Well I feel your pain! I have been having a fit with my shingles hip the past week. Horrible pain. I hope you don't develop the long term nerve damage like I did. I enjoyed showers it provided a little relief. The medication definitely helps. I got aloe Vera gel that contains lidocaine. I also really liked Bactine pain relieving cleansing spray which contains lidocaine. I will post a picture of both.

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ravencajun Zone 8b TX


Good luck! Don't scratch!

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georgysmom2

Maybe baby shampoo?

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watchmelol

I had them my scalp on the front left quarter of my head. I switched to a milder shampoo during the time. I also avoided my Pureology Conditioner since it has peppermint extract and I didn't want the additional tingle.

I still get postherptic itch but thankfully the post neuralgia (shooting pains) were short lived.

Within a month or so of those I got a second set but this time on my upper right back. Less pain from the start but itchier. I only have a small area that tingles from time to time now.

Anti virals only really work if taken at the first signs. It is often difficult to catch the first signs since they are different for everyone. Mine was a single tiny bump at the edge of my hairline. It was about a week later the shooting nerve pain hit my head.

Anti inflammatory medication like high dose (not OTC) Ibuprophen do help. My doctor advised I take it all the time by the clock even if I wasn't experiencing pain to keep inflammation at bay.

Too messy for the scalp but this stuff is the very best for pain and itch on the skin. My doctor recommended it. It is available OTC but hard to find. I bought mine on Amazon.



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Alisande

Thanks, everyone! This morning I took a shower wearing a shower cap, and then I washed my hair in the sink with cool water and Dr. Bonner's unscented baby soap. It felt good. Towels and pillowcase, etc., are in the wash as we speak. I hate to goop up my hair with aloe now, but such is life with shingles.

The nerve involvement has resulted in a significant loss of strength in my right arm. I can't even open or close windows. I hope this resolves.

When I had my first case of shingles my experience was similar to Myrica's. I went to the ER in the middle of the night (Saturday night). I was there through two shifts, and the doctors were both young and rather arrogant. No diagnosis. A day before that I was seen at my doctor's office by a Nurse Practitioner who said my pain was from an abscessed colon. I refused the Flagyl she prescribed. We talked about CT scan vs. MRI, and she said MRIs use just as much radiation as the scans. MRIs use no radiation. I usually like CNPs, but I wouldn't go back to that one.


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maire_cate

That sounds just awful - and I have nothing to add other than I hope you're getting relief from the gabapentin. Are you able to sleep now? It's bad enough to have shingles but to compound it with little sleep sounds like misery.

Take it easy and spoil yourself for a few days.

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Alisande

Thank you, Maire. Yes, thanks to the meds I can sleep now. I woke up too early this morning because of the nerve pain down my arm, but I'll nap soon. I was too active Thursday and Friday, then Friday night I slept 8 hours. Got up, had coffee and some breakfast, lay down on the sofa and slept 4 more hours! I'm so relieved to be sleeping again after those wretched 8 or 9 nights.

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Jasdip

I have nothing to offer at all, except humungous best wishes for you through this crap, Alisande.

I use baking soda to wash my hair, and I would not recommend that to you! ;-)

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blfenton

Alisande - I didn't notice if you had mentioned whether or not you had the previous shingles vaccination. A friend had it and is wondering whether or not it's worth having the new one.

I hope you're feeling better soon with no lingering after affects. We've had several friends who have had shingles and it sounds pretty uncomfortable according to what everyone experiences.

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Alisande

Thanks, Blfenton. Yes, I had the original shingles vaccination at some point after experiencing shingles. Then probably a couple of years after the shot I got shingles on my eyelid. It was much milder than my first bout, but in a dangerous place.

When I received the shingles vaccine I was told it would last my lifetime. This turned out to be yet another medical "oops" because now they say it was good for five years only. Your friend should take this into consideration. I elected not to get the new shots because I have chronic illness and tend to react to everything, and reaction to the new shots (perhaps only the second one) is not uncommon. I've heard of others in my situation who never really recovered from a flu shot, for example, and I, too, had a nasty reaction to a flu shot years ago and was grateful to get over that.


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maire_cate

blfenton - DH and I had the previous shingles vaccination and last year we both received the new one which is 2 injections a few months apart. That's what the CDC and our physicians recommend for us -

https://www.cdc.gov/shingles/fact-sheets/shingles-factsheet-adults.html

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sjerin

I'm so sorry you're having to deal with yet another physical difficulty, Susan. How unfair. When I had them I was lucky to get the anti-viral in time, so mine disappeared quickly.


Just a quick comment about gabapentin- have you used it before? Sometimes when it's used longer-term it can mess with the mind. Do read about the side-effects, if you haven't already. Yeah, sometimes you just have to go with the lesser of two evils. Feel better very soon!

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chisue

SO Sorry! May this be the END of your trials with various nerve-wracking (literally) problems.

I can't 'do' gabapentin; crazy-making.

I'm a little surprised that your doctors gave you the anti-shingles vaccines. I, too, am immune-system-compromised (chemo and just plain OLD).

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ravencajun Zone 8b TX

Another here who can't and won't take gabapentin. It's definitely not a drug everyone can take. It was a no go for my heart.

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morz8

Dr. put my mother on a tiny dose gabapentin last Fall. It's been very helpful and no side effects that have been determined. She's sleeping though the night for the first time in years. Bedtime dose, along with an equally little dose of ropinirole. At 105 pounds, little bit has been fine and effective.

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myrica4

Chisue - you mention having a weak immune system and being vulnerable to shingles. I got shingles when I was part of an early clinical trial to damper down an overactive immune system. It worked way TOO well.


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blfenton

Alisande - I have had the new shingles vaccination and I didn't react to the first one but boy, I thought I had been hit by a semi-truck after the second one. I didn't have the old vaccination and haven't had shingles. fortunately.

I wonder if a three part series is doable?

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lisa_fla

I had the 2 part series earlierr this year. I figured whatever the side effects, it’s much better than shingles. I didn’t realize that it’s not obvious when you first come down withit. I thought people had a bunch of lesions. I can see how that would put you outside the optimum window for an antiviral.

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Anglophilia

I’m the queen of adverse reactions, but zero problems with either of the new shingles shots - I’d heard about the 2nd being a problem for some, but no problem. I’ve never had a problem with flu vaccine but with my chronic respiratory problems, flu can be a big problem. I always get my flu shot! I think it’s wonderful that now that there is a vaccination against chicken pox, those who never get chicken pix will never have to deal with the risk of shingles! Boy, does it hurt!

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mdln


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Alisande

Sjerin, thank you so much for mentioning side effects. I am extremely protective of my brain, which seems more vulnerable the older I get. (I'm 76.) I haven't noticed any weird moods or thoughts, but I have noticed that I can't keep a thought in my head. This is always an issue to one degree or another, but noticeably worse this week. I just figured the shingles was responsible, which I suppose it could be.

I'm not feeling as cheerful as usual, but pain does that. Also, another unpleasant aspect of this illness is that I have to stay away from my son, daughter-in-law, and grandsons because she's pregnant and the chicken pox virus I'm shedding is dangerous to the baby. The doctor says I won't be contagious anymore when the blisters dry up, but I don't know when I'll feel comfortable about being in contact with everyone. They are all normally in and out of my house, and although I'm usually good about keeping myself amused I feel rather alone these days. I had been watching the boys (5 and 8) while their mother had her doctor's appointments, and I had activities planned for us. They live just across the road, and the 8-year-old especially is used to popping over here whenever he feels like it to read a book with me or throw a ball around or just hang out. I'm going to write letters to the boys tomorrow and email them to their mom.

Anyway, when I looked up side effects I saw the emphasis on NOT stopping gabapentin abruptly. No one told me about this. The only thing the pharmacist mentioned is that it might make me drowsy. I asked the doctor for a low dose, and it's low enough that the pharmacist commented on it (200mg once a day, at night).

Blfenton, stories of experiences like your is what put me off the new shots.

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sjerin

I understand gabapentin can work very well on nerve pain, but it made my mother desperately sad and a little goofy, if I remember correctly. Yes, it's VERY important to get off of it gradually!

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nicole___

DH is having sudden pain down the back of his leg/butt, then it moves to his lower back. No lesions. He's seeing a doctor today....wondering if it could be shingles. There was no accident or trauma...just this sudden outbreak of pain.....? I'm guessing she'll order an MRI...check for a bulging disk...?

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watchmelol

Nicole, Good he's seeing a doctor but that sounds like sciatica.

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Alisande

Yes, sciatica was my first thought too. I know a couple of people who have been helped by specific exercises.

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nicole___

Alisande...hope your feeling better...?


Your both right! His hips & spine were both X-rayed & showed nothing.. Walking helps....and sit ups.

When he asked to get the shingles shot, he's 61 years old....WE were both put on a waiting list at Walgreens. I called Costco, same thing. ANY PLACE I SHOULD TRY TO GET IN SOONER? Any advice?

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mdln

Patient told me she put her address into google map, searched for nearby pharmacy, and just started calling phone #'s on the list, and had success finding pharmacy that had it in stock.

Good luck.

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maire_cate

I fear you'll just have to call around.

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Alisande

It turned out I have two separate issues: shingles and a pinched nerve in my neck, causing pain in my shoulder and down my right arm. My theory is the stress of the pinched nerve--pain plus sleep deprivation--caused the shingles, but of course I don't know that for sure. When I lost some strength in my arm, the doctor sent me to a neurologist for testing. He confirmed the pinched nerve, and could tell which vertebrae were involved. He said the pain from the two issues overlaps.

Before that appointment I was helped enormously by a YouTube video made by two physical therapists. In it, they described the best sleeping position to use if you have pain exactly like mine. I gave it a try as the meds were helping less than they had been--and I slept 7 hours! I'm still napping every day, still catching up, and my stamina is still less than my less-than-impressive "normal," but I'm starting to feel lots better. Tomorrow I go to the doctor for an evaluation of the blisters, etc., and I hope she'll tell me it's safe to be in contact with my family again.

PS: Two local friends told me they've been on a waiting list for the Shingrix vaccine for two years!


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jakkom

Susan, sorry to hear you're struggling with shingles - ugh! Had it once and hope to never have it again, LOL.

My GP said supplies of the Shingrix fluctuate so much, our HMO is currently requiring appts for it rather than the usual "just drop in any time" that they do for all other vaccinations. She suggested I check their website periodically and get the 2 shots sometime in 2020. We received the old vaccine 3 yrs ago.

Glad to hear you found a sleeping position that works better for you. Hope you recover soon!

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chloebud

"Two local friends told me they've been on a waiting list for the Shingrix vaccine for two years!"

Alisande, yikes...two years!? I just had my second shot for the new vaccine at a pharmacy. No problems with availability for both the first and second shots. Someone might have already mentioned this, but a couple people I know had some luck with L-Lysine for shingles. I've never had shingles but my mom had a really bad bout and got relief from L-Lysine. Anyway, good to know you're doing better now!

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Alisande

Thanks, Chloe. Yes, I've been taking l-lysine ever since my diagnosis because it has helped me many times in the past with cold sores. The neurologist I saw told me he takes l-lysine every day to keep these viruses at bay. I thought that was interesting.

A new concern of mine is hair loss. I'd read that scratching the blisters can cause permanent hair loss, but thought that wouldn't be a problem for me because I haven't scratched them at all, and I followed the recommendation to use only scent-free, gentle soap and shampoo during the outbreak. Nevertheless, I'm losing hair. Sure hope it won't be permanent.

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chloebud

That is interesting about the neurologist's daily dose. I hadn't heard shingles could cause permanent hair loss. Gotta read up on that. It makes sense if there's any scarring, but it seems your refraining from scratching should take care of that.

Still can't get over the two year wait you mentioned. That's seems crazy!

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chloebud

Thought I'd mention this FWIW. I was just talking to a neighbor. She went to Costco's pharmacy for her shingles vaccine. No problem there with availability. I got mine at Sam's Club pharmacy. Just thinking those two places might be worth checking for anyone having trouble with availability.

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nicole___

chloebud...I googled, "Shingles vaccine locator"....and it pulled up a "locator". Found it!! The usual places are out of it. Walgreens, Costco, Urgent Care, Kroger pharmacy, My physician, CVS Target. I found it at a local pharmacy.

The locator asks you to enter your zipcode...

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Alisande

I tried the locator, and got 98 results. LOL It did say some of them might be out of stock. My doctor mentioned that it's very hard to get, so maybe the people waiting two years are waiting for their doctors to get it. We don't have a Costco, but we do have a Sam's Club about 25 miles away.

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chloebud

Nicole, so glad you found it!. I just entered our zip code and almost every place I can think of close by has it, including Walgreens, Sam's, Costco, CVS, Target CVS, Sav-On, Rite Aid, Vons, Albertsons and lots of medical offices/groups. It must just depend on your location...? As I mentioned, I got mine at Sam's pharmacy, and the second shot was just last week at Sam's. I had the first one in March.

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chloebud

Alisande, I just looked again and did see the "check for availability" and "not a live tracking tool" notations. That could make a difference, but I do know both our Sam's and Costco have the vaccine as of last week. They are literally a half block from each other and a mile from our house so very convenient.

ETA - Good point about people may be waiting for their doc to get it. in They should check further. I simply walked in Sam's, asked for it...done! Actually I know several people who've now had the 2 shots, and none had to wait.

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nicole___

We just came back from getting our 1st round of shots. :0) I used 50 miles on the locator, came up with 594 locations, but .......I was on the 2nd page before I actually found it available. My neighborhood Walgreens said they had a 16 page waiting list and would not put anyone else on it. THAT sounded like two years to me! After we get the next round of shots I'll go on "Nextdoor" and publish the "Shingrix locator". People just think because one place is out & they heard it on the news it was scarce....it's not worth looking around.

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chloebud

"My neighborhood Walgreens said they had a 16 page waiting list..."

Nicole, I'm feeling more and more fortunate I didn't have a problem getting mine. I'm just puzzled why after hearing about these long waiting periods. Glad to hear you got yours!

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schoolhouse_gwagain

Not sure if it's relevant, but I remember a year before I got my two Shingrix (which I got three years ago?) my doctor told me about a new shingles vaccine but wanted to wait and see about side effects before he offered it to me. In the meantime I went to CVS and got them without telling him.


So maybe the vaccine is in short supply because they (whoever "they" are) are taking a wait and see stance. OR - the vaccine proved to be so effective that there really isn't enough to meet demand. Just a thought.

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chloebud

schoolhouse_gwagain, my guess is it could be 'wait and see' coupled with the apparent improved effectiveness of Shingrix over Zostavax (the single dose vaccine). I know hearing the 90% or so effectiveness for Shingrix sounded pretty good to me. Other than some minor arm soreness with the second shot, I had no side effects. The soreness was also gone by day two.



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nicole___

My understanding of the vaccine shortage is.....at first they said 60 and over, then opened it to 50 and over. That's when the stampede began.

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