Shingles...anyone go through this?

jane__ny

I'm 72, live in Florida, take care of my 88 yr old hubby and our son just moved in because he got laid off. Life has been stressful, to say the least.

I developed, what I thought was hives on the back of my neck. My scalp started getting itchy and I started thinking, maybe its head lice!

Then I started feeling like I had a terrible ear ache and went to the doctor.

After examining, she told me it was shingles on my head. I have never heard of getting shingles on your scalp and neck.

Anyway, its two weeks now and I'm still miserable. I have scabs all over my scalp, pain and blisters.

I took anti-viral medication but it seems like it keeps getting worse.

My strength has been sapped, I feel weak and tired. Don't have the energy I had. I've always been active and healthy. This, on top of Covid has been a very depressing episode on my life.

Sleep is almost impossible because the burning on my head makes it almost impossible to sleep. My head hits the pillow, and its so painful.

Sorry, this is so long, hoping for someone who went through this and can give me hope.


Jane

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dbarron

This is 2nd hand, so not gospel, but it's my understanding that once you have shingles, you will get recurrent outbreaks and it just doesn't go away at all.

This is why (as I understand it) you should get a shingles immunization vaccine before you get the outbreak.

I hope (for your sake) that I'm wrong. I'm certain someone with first hand knowledge can give better info, or you could just google shingles and read all sorts of information.

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mdln

The sooner antivirals are started (esp. less than 72 hrs after rash onset), the better they work. They shorten the length and severity of the episode, and help prevent the complication of postherpetic neuralgia. Antivirals are NOT pain medications.

Have you tried acetaminophen/Tylenol or ibuorofen/Motrin for pain relief? If those do not help, there are several other types of medications your physician may prescribe.

Strongly encourage you to contact your doctor.

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wildchild2x2

I had shingles twice a few months apart. two years ago. The first was on my scalp and brow. My fear was it could get into my eye. My doctor gave put me on an oral antiviral even though we knew it was probably too late to be of much use. He also put me on prescription strength Ibuprofen. For the burning and itching he recommended Calmoseptine. It's an OTC ointment but sometimes difficult to find. I bought mine on Amazon. Very thick gooey and messy since it's zinc based like diaper rash cream but the stuff works. I now keep it in my medicine kit for any itch, skin irritation etc. My second bout of shingles was on my upper back. That was easier to deal with than the ones on my head. I also went to the eye doctor with the ones on my head to eliminate any possibility the virus was or would get in my eye. I found the unannounced random afterpain annoying but bearable. I never stopped activity however. I continued to ride and exercise but did try not to get overheated was was difficult at the time of year.


Not sleeping well because of the discomfort and not being able to be active plus the Covid situation must make it much harder for you. I hope you heal soon.

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Jeb zone5

Jane - please know that you will get through this and you will feel better. Two years ago I had a bad case of shingles up the right side of my shoulder and neck, in my ear, on my ear, and behind my ear. It covered the right back side of my scalp - washing my hair in the shower was super painful, as if it wasn't painful enough to begin with. I also experienced a sharp pain in my temple around where the occipital nerve is located. Shingles took away all of my energy and made me feel really lousy for a couple of weeks. I took the anti viral medication my doctor prescribed and for pain I took 1000 mg of acetaminophen. Before bed I took 1000 mg of acetaminophen and 400 mg of ibuprofen together and it really helped with the pain.

It is two years later and I still have a little tingling where the rash was but that is fading slowly and I'm hoping that it goes away completely with time. Until then I just try to ignore it.

Again you will feel better, get as much rest as you can, go easy on yourself and follow your doctor's orders.

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Lucille

I had it on one side of my abdomen. The pain lasted for three years, as I remember.

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Bookwoman

This is a good reminder for everyone over 50: if you haven't gotten the Shingrix vaccine, do so!

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graywings123

Jane, I have no suggestions to offer to alleviate the pain, but having had shingles, I send you my sympathies. It is an awful disease to suffer through. Once this has passed, make sure you get the shingles vaccine to help prevent getting it again.

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Ded tired

Jane, I just want to say how sorry I am that you are going through this, as if your life wasn’t stressful enough. I would not be surprised if the stress is contributing to the shingles out break. Ive known others who had shingles and it was pretty miserable for them. How awful that you can’t even lay your head down. Would sleeping in a recliner help?

I really need my second shingles shot. My doctor wants to hold off because the side effects are similar to Covid. I also am experiencing some upsetting and somewhat painful conditions, not as bad as yours, so I can sympathy. I also watch out for my 103 mother and understand caregiver stress.

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chisue

If you do a search, you'll find a lot of us have had shingles. I've learned to avoid stress if only to try to avoid this nasty herpes. Mine was only right quadrant of my forehead, above my eye. I thought I had a spider bite, but saw my doctor and got the anti-herpes started immediately. I'm sure that is why my case was relatively mild. Wildchild's ointment sounds promising! Ask you doctor for strong meds to fight the pain. I hope it runs its course and QUITS!

Avoid any pregnant women. You are contagious for chicken pox.

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Elmer J Fudd

Very sorry to hear about your discomfort. Some of our friends have had the same bad luck, one of my parents did some decades ago as well. I hope the symptoms pass soon.

I'm curious, did you have the most recent series of two Shingrix injections? It's supposed to be pretty effective. My doctor pushed me to get them and I did. So far so good for me but that doesn't help you any. I was wondering if the Shingrix treatment failed to protect you?

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honibaker

Hi Jane,

Sorry you are going through this.

I had shingles on a different are of my body (right-sided, abdomen and back), with similar awful symptoms. All of a sudden, at three weeks after onset of first symptoms, the pain ceased (well, at least 95%). At four weeks I had NO pain and no open blisters. I was told many cases are limited to a few weeks.....so let's hope this will happen to you.

My brother had shingles on his face (cheek, below the eye), which also lasted about three weeks.

Good Luck!! (Note....this was before Shingrix)

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arcy_gw

Yes I would have assumed shingles at the neck rash. In fact two weeks ago my scalp felt overly sensitive and it made me worry about shingles. I have heard of many cases like yours. I am sorry you didn't get to the doctor faster!!

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Alisande

Oh, Jane, you have my sympathy! I had shingles on the back of my head in the autumn of 2019. It affected a nerve in my neck, and the worst of my pain was down my neck and upper arm, especially lying down. There was no comfortable position, and for a couple of weeks I could sleep no more than 2 hours at a time, then wait three hours for the pain to subside so I could try to sleep again. I was a zombie.

A YouTube video by Bob & Brad, physical therapists, gave me a new sleeping position and some much-needed sleep. But the rash on your scalp is another issue. The thing that helped me the most was using aloe vera gel, straight from the plant. I would slit a spear, exposing the gel inside, and then smear it on my scalp. Of course it got all over my hair, but I didn't care. I used it several times a day, whenever I felt pain or itch, and it must have helped with the healing because my doctor was surprised that the blisters disappeared when they did. It seemed like a long time to me though.

I also read a lot online and learned to wash my hair with gentle unscented castile liquid soap, not shampoo, and I drank lots of lemon balm tea, which is supposed to help. I also tried lemon balm ointment, but it didn't help me.

Bob & Brad also recommended that I use a cervical pillow for the nerve in my neck. mine is made of memory foam, which felt hard against the blisters---not good. Even today, my scalp is still slightly sensitive and I don't like to use that pillow all night. I keep a shredded foam travel pillow next to me and make the switch if I wake up too early.

If you think a different pillow would help, I recommend a soft foam. Shredded foam is helpful because you can push it where you want it, and for me the travel size works better than a full-size pillow.

I hope some of this advice helps you. The other thing is try to rest whenever you can. Try not to think about what you would normally accomplish. Your body is fighting a viral infection, so of course you're tired and weak. Plus you can't sleep normally. Indulge yourself in whatever ways you can. Let us know how you're doing.

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fran1523

My heart goes out to you that you have to go through this. I've had friends and relatives suffer from this so jumped at the chance to get the Shingrix shots. They did cost me almost $400 but Im thinking a small price to pay. I had no side effects from the vaccine except for a sore arm.

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phyllis__mn

I had the old shingles vaccine, but go a case of it a couple of years later. I think that having the vaccine helped in that I wasn't seriously smacked with shingles. I had it around my eye, which worried me, of course, and itchy scalp and all those things, but I have been getting repercussions now and then with "lumpy" scalp, and really itchy eye brow region. I got the two-part shingle vaccine a couple of years ago so hope that will prevent a real flare-up.

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raee_gw zone 5b-6a Ohio

Jane, if you haven't yet I would encourage you to get back in touch with your MD for better pain control (there are options other than narcotics),or perhaps even a consult with a dermatologist.

When my father had it, he reached out to a dermatologist friend who made several recommendations that did help quite a bit. Perhaps that would also help you.

Better to act as promptly as possible in order to reduce the risk of prolonged post-outbreak pain.

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Alisande

I want to add that I took L-lysine throughout my bout with shingles, and it might have helped. The literature says it doesn't help shingles, but I know it's an anti-herpes, and works so well with herpes simplex, so perhaps it would help with herpes zoster. Later, when I saw a neurologist about the lingering nerve damage in neck and arm, he suggested I take 250mg a day of L-lysine forever to avoid another shingles outbreak.

The substitute I had for my regular doctor prescribed gabapentin, and I will always regret taking it. For me, the side effects were many, some of them long-lasting, even though my dose was low, and although the drug reduced the deep nerve pain it wasn't worth what I went through because of it, including the necessity for a root canal because a nerve in one of my teeth died. Yes, the gabapentin did it. Lots of empirical evidence reported online. (Elmer will love this, I know.).

This is not to say you would have the same experience if you took gabapentin; some KTers have taken it without a problem. But I'm warning you because I wish someone had warned me.

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lily316

I sympathize with all who have had this hideous disease. I don't know if it runs in families, but my mother, her sister, her nephew, and niece all had serious cases. I got the first vaccine and jumped at the chance to get the two series one that followed that one. My aunt was hospitalized with it and lost the vision in one eye, so take very good care of yourself, Jane and I hope you feel better soon.

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chloebud

"I want to add that I took L-lysine throughout my bout with shingles..."

My mom had a terrible case of shingles and L-lysine really helped in her case. Because of her, I got the old shingles vaccine, then got the two Shingrix shots later. If I remember right, the shots need to be 2-6 months apart.

FWIW, this is from the CDC.

Should I get Shingrix after having shingles?

If you had shingles in the past, you can get Shingrix to help prevent future occurrences of the disease. There is no specific length of time that you need to wait after having shingles before you can receive Shingrix, but generally you should make sure the shingles rash has gone away before getting vaccinated.

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morz8

Jane, how are you doing, are you getting any more productive rest? I hope if you haven't called your doctor with an update that you will. I think there is more that could be done to make you more comfortable, get you past these first worst days. Best wishes to you!

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patriciae_gw

You get shingles because you have had chicken pox at some point in your life. As we get older or sick in some way our immune systems get weak. When that happens the chicken pox that has been hiding in our nervous system can break out and cause the symptoms we call shingles. Stress or some major illness can trigger out breaks. Having Shingles will NOT keep you from getting it again. If you have had it once you are more likely to get it again. Get the latest shingles shots. It is your best bet for keeping it at bay. The original shot worked for a shorter period of time. The later two shot series is much more effective. Having had shingles is a good indication you should talk to your doctor about getting this set of shots.

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Ladydi Zone 7A NW BC Canada

My SO, who is almost never sick, thought he had a scratch or pimple on top of his head and kept 'picking' at it. I had a look and told him it looked like a blister and to stop touching it & suggested it could possibly be the start of shingles. Two days later he went to emergency where they confirmed it. One of the few times I hated being right. Took quite some time to go away and he went through alot of T3's & Tylenol plus months of discomfort before things seemed relatively back to normal. Poor Sweetie 🤕.

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jane__ny

Thank you all for your kindness and information. I only knew one friend who got shingles and suffered for a long time, winding up in the hospital.

I haven't felt pain like this in my entire life. I get sudden attacks of nerve pain that almost knock me off my feet. It feels like an electric shot shooting up from below my ear to the top of my head. Its indescribable. I literally lose my breath and need to get into a chair. I've been taking Advil throughout the day but I don't think it helps at all.

My doctor made it sound like i just have to ride it out, but now I'm getting nervous about driving because the sudden pain is unbelievable and literally takes my breath away.

I can't get the Covid vaccine until this is over, so depressing.

I'm terrified of washing my hair as I can't even touch my scalp.

What type of doctor specializes in this? Its going on three weeks and I feel very depressed over this. It's not going away.


Thank you all so much. It helps hearing how others got through this and came out on the other side!

Thank you, thank you again!

Jane

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ravencajun Zone 8b TX

Oh yes unfortunately I definitely did have shingles. I got on the antivirals within a few hours of the first sore showing up. I had them from the middle of my lower back around my hip and part of the left buttock around to the front of my thigh and the upper inner thigh. It was a terrible experience. I got relief from products with lidocaine, and bactine spray, and aloe Vera gel - pure no alcohol added. Unfortunately I still have severe pain in that hip from the lingering postherpetic neuralgia. I am sure it will be with me for the rest of my life.

I hope you have been able to find some relief.


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raee_gw zone 5b-6a Ohio

Jane, as I mentioned, a dermatologist was able to help my dad.

Or, perhaps an infectious disease specialist?

Either one should be able to consult with you via remote visit.

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sealavender

This thread inspired me to call my doctor to see about gettin the Shingrix vaccine. Get well soon!


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jane__ny

Thank you all again.

It does make me nervous hearing some people have lingering affects. I need to desperately wash my hair between using the ointments and not really being able to comb it, I look pretty bad.

Alisande, it sounds similar to how its affecting me. It is all over the left side of my head, ear and down the left side of my neck. I have constant pain in my ear and back jaw. I feel like I'm living with the worse toothache and ear ache all day. I can't touch my scalp at all. Its so sore and I've tried to comb my hair a bit but as soon as I touch my hair I get a shooting pain up my left side into my left temple. Its horrible and stops me in my tracks. It gives no warning and I feel like I will be sick and faint. Never experienced pain like this. Its sudden and only lasts about a minute but nearly knocks me out. I get to the freezer and pull out a bag of frozen vegetables and put them on my head.

I looked up L-Lysine and I'm going to order it. Do you remember what milligram you used? I'm going to try anything at this point.

Elmer, I did not have the vaccine. Stupid of me as I thought about it earlier in the year. I had scheduled a flu vaccine and they told me to wait a few weeks before getting the Shringix vaccine. Then Covid hit and I obviously did not get it.

I want the Covid vaccine but now have to wait until this is over. It seems it doesn't want to end and it just adds to the stress. I feel so unlucky. No one I know of in my family ever had Shingles. However, I do worry about my husband but think he should get the Covid vaccine first (if we ever get it).

So many great comments and advice. It helps make me better understand what I am going through.

Jane

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LoneJack Zn 6a, KC

Jane - there are medications that can help control the nerve pain. My DW has a condition called Trigeminal Neuralgia and has been prescribed a drug called Tegretol by her Neurologist to help control it. There are quite a few side effects though.

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Alisande

Jane, my L-Lysine capsules are 500 mg, which I believe is the standard dose. It comes in tablets too, but I find the capsules easier to swallow. Your experience is making me rethink my decision not to get the Shingrix vaccine. My own experience was bad, but the pandemic made me forget about a lot of things other than the threat of Covid. I got my first Covid shot two days ago, though, so I guess if I decide to get the shingles vaccine I'll have to wait till after my second Covid shot.

Some supplements help calm nerves. You might look into magnesium (magnesium glycinate is good--don't bother with magnesium oxide) and a B-complex like B-50. Someone told me the other day about an amino acid called L-Theanine, which is said to be calming without sedating. I haven't tried that one, but I take mag and the Bs regularly.

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jane__ny

Thank you, Alisande.

I'm going to order on Amazon. I have a problem with Magnesium, I wind up in the bathroom. Is it something you adapt to? I take a multi which has a bit of everything in it should I continue if it already contains magnesium? Maybe I was taking the wrong type of magnesium. I just checked and it is Oxide. I'll order a small bottle of what you recommended and try it.


I can't seem to get over this. Each day is painful and I'm exhausted. It seems to sap all my strength and I just wish i could sleep through it all. So painful.

I wish I had gotten the shot also. I went for the flu shot and they told me to come back for the shingles shot in two months. By then Covid hit. Now I can't get the Covid vaccine because of shingles.

I thought last year was the worse and was looking forward to a new year. Seems like 2020 has just continued its path into this year. So depressing.

Thank you for getting back to me, I'll order them all on Amazon.


Jane


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ci_lantro

I have a problem with Magnesium, I wind up in the bathroom.

Which form of magnesium?

I take magnesium glycinate with no side effects. 400 mg daily. The glycinate form is less likely to have a laxative effect than magnesium citrate.

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raee_gw zone 5b-6a Ohio

Jane, did you ever get back in touch with your doctor? What did he recommend?

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Elmer J Fudd

Very sorry for your predicament. Jane. I hope you feel better and can get caught up with your medications very soon.

It seems like Shingrix came out several years ago. My primary care physician pinged me to get it ASAP at the time. I didn't hesitate because I remember my father having several painful shingles episodes that each lasted a long while.

Keep you doctor posted with how it's going, hopefully there may be more they can do for you.

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Annie Deighnaugh

Interesting about the l-lysine. My kitty has eye herpes...she came from the shelter with it...and when it acts up, vet said to give her l-lysine and it goes away. I now give her daily brewer's yeast (high in B vitamins) as a preventative and it keeps it at bay most of the time.

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Ladydi Zone 7A NW BC Canada

Nit to hijack this thread but, I developed GCA (Giant Cell Arteritis) two years ago. Apparently, medical researchers believe there is a direct link to Shingles for this autoimmune disease. Many believe that the Shingles vaccine might also trigger GCA. Kind of scary how little we really know.

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Kathsgrdn

Alisande, you shouldn't get any other vaccine 14 days before or after your covid vaccine.

Jane, hope you find some relief for the pain.

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