Shingles from HELL

[ShinglesHell]

Hi all, hoping someone may have some help or advise as feeling very alone with this. I first got shingles in Dec 2019, just a few small blisters above my left eye with some eyelid swelling, then had it again in the same area but less severe in March 2020. Both times not nice but healed pretty well with antivirals.

Flash forward to (Feb) 2021 I get another outbreak again over the left eye/side of the forehead, felt mild again took antivirals, maybe didn't rest as much as previous times. Literally, a couple of weeks later (March 2021) shingles break out again but this time over the RIGHT eye!! There were lots of blisters this time even down to my chin and with severe ear and neck ache. Took antivirals again, at this point I had always taken the 5 x day 7-day acyclovir. I start seeing scars :( lots of little crater type ones from where the little blisters are erupting over my face. Flash forward to another few weeks (April 2021) it feels like I'm getting them again... but think oh no maybe it is just PHN (post neuralgia thing), it CAN'T be shingles again, call GP for meds just in case but then notice lots of dried up blisters so it was too late but I did have it again after all...

Then flash forward to now the last week or so (now in May 2021) complete horror story, I get it again but this time on my tongue!! even few blisters on my gums, and by my ears and neck, hearing affected, tongue bleeding from sores knocked. I believe when in the palette it is referred to as Ramsay Hunt syndrome. I am on the last day of antivirals (this time requested famciclovir instead 3 x day) and still breaking out in blisters on my face despite a week on meds, can feel it on the scalp too, the worst thing is it is for certain bilateral this last time which normally can only happen if someone has weak immune system.

Doctors ordered blood tests to look at HIV not back yet (but had test last year after shingles twice and was neg) and for immunoglobulins (back normal I believe) and for ESR (my ESR was elevated it was 27 should be less than 20), otherwise no flags.

They have also done a swab to send to the infectious diseases dept at the local hospital.

I'm so upset and worried. Has anyone got any thoughts on why all this is happening to me ongoing 4 x shingles since Feb/what I should do or ask of GP further? Surely AINBU to want more help from them over this? I am freaking out with this shifting dermatomes in this way and just not going.

Thanks in advance

If it helps I am 38, female and a single mum to 2 kids.

@ShinglesHell That sounds truly awful.

Not quite the same I know but I suffer from horrendous outbreaks of cold sores, sometimes so severe that I am off work for a week or so because of the neurological pain that a really bad outbreak causes me.

I have had hundreds of blood tests and although I have been diagnosed with an autoimmune disorder (Pernicious (sp?) Anaemia) the doctors can't confirm if the 2 are linked and have advised that there is nothing I can do apart from take a daily dose of anti-viral to try and minimise the amount of flare ups I get and of course take the increased (5x daily) dose when I do get flare ups.

Other than trying to be as healthy as you can and avoid stress where possible (ha ha) and strong sunlight there isn't much else to do apart from know that you are not alone in this reoccurring hell and have a good old whinge about it on here.

I’m not sure if this is a possibility, but there is a vaccination for shingles.
My mum had it on Monday

Oh god you poor thing! As I was reading it I was thinking, are they doing any investigations? So it’s good that they are.

I had shingles last year and it was really painful and wiped me out. And that was only on my left side!

I had a terrible case of shingles about 13 years ago. GP said she wished she had a student in so she could show them how bad it could be I then had a series of infections that would not clear up. After investigations, I was referred to Immunology and diagnosed with CVID (primary immunodeficiency). Maybe ask for a referral to Immunology to see if there are any issues with your immune system. Good luck.

My friend is a homeopathist- she got shingles on a wednesday and was back to work no problems by the monday- she went to her homeopathist- unreal! I'm now getting it for cold sores and it's totally stopped my monthly flair up in it's tracks.

I really feel for you OP. I had 5 attacks of shingles over about 3 years in my late 30s, and it's a bitch. All I was ever prescribed was acyclovir.

And for about 10 years after that, I had several attacks of post-herpetic neuralgia in the same area.

And then it just stopped. I haven't had even a hint of either for about 15 years now.

I hope this clears up quickly. If it's any reassurance, I found that the attacks got progressively less severe each time I had one.

[quote PearTreeBoat]@ShinglesHell That sounds truly awful.

Not quite the same I know but I suffer from horrendous outbreaks of cold sores, sometimes so severe that I am off work for a week or so because of the neurological pain that a really bad outbreak causes me.

I have had hundreds of blood tests and although I have been diagnosed with an autoimmune disorder (Pernicious (sp?) Anaemia) the doctors can't confirm if the 2 are linked and have advised that there is nothing I can do apart from take a daily dose of anti-viral to try and minimise the amount of flare ups I get and of course take the increased (5x daily) dose when I do get flare ups.

Other than trying to be as healthy as you can and avoid stress where possible (ha ha) and strong sunlight there isn't much else to do apart from know that you are not alone in this reoccurring hell and have a good old whinge about it on here.[/quote]
Thanks PearTree, just so awful isn't it, lack of info from doctors and reading internet is scary saying shingles can go to brain etc!

Yes avoid stress (ha ha) to be fair I have been very stressed! Maybe this will teach me to say no and do yoga... sorry to hear about your coldsores and autoimmune disorder, that must be so distressing. Hugs!

Maybe they might think put me on daily dose to prevent -- how much a day do you take and does it help?

@Mydogisagentleman

I’m not sure if this is a possibility, but there is a vaccination for shingles. My mum had it on Monday

thank you, have to be 70+ for vaccine in UK! booo

@Wetcappuccino

I had a terrible case of shingles about 13 years ago. GP said she wished she had a student in so she could show them how bad it could be I then had a series of infections that would not clear up. After investigations, I was referred to Immunology and diagnosed with CVID (primary immunodeficiency). Maybe ask for a referral to Immunology to see if there are any issues with your immune system. Good luck.

Sorry to hear this @Wetcappuccino when you say series of infections, do you mean shingles again ? They did some blood tests related to immune system but will see if they checked for that, thanks!

@beereyt

My friend is a homeopathist- she got shingles on a wednesday and was back to work no problems by the monday- she went to her homeopathist- unreal! I'm now getting it for cold sores and it's totally stopped my monthly flair up in it's tracks.

Great, alt meds are good too! will look into thanks

@LakieLady

I really feel for you OP. I had 5 attacks of shingles over about 3 years in my late 30s, and it's a bitch. All I was ever prescribed was acyclovir.

And for about 10 years after that, I had several attacks of post-herpetic neuralgia in the same area.

And then it just stopped. I haven't had even a hint of either for about 15 years now.

I hope this clears up quickly. If it's any reassurance, I found that the attacks got progressively less severe each time I had one.

Hi @LakieLady, oh that does sound awful too! Mine seems to have got worse each time these last four episodes... going to try keeping very still and avoiding stress!

Ramsey Hunt is hell! You have my absolute sympathy. It took me months to fully get over it. I'm lucky I have not had a recurrence. I work for the neurology department at a hospital and a consultant gave me some advice... might be worth requesting a referral to neuro given how many times it keeps recurring.

I hope you feel better soon

thank you, have to be 70+ for vaccine in UK! booo

You can probably get it privately.

Sorry you are having a hard time.
My dr prescribed a 3 month cycle of acyclovir and suggested intake multi vitamins as I was very run down and had recurrent shingles. Been clear for about 18 months now.

It was a series of general infections (Conjunctivitis etc). I have only had shingles once (touch wood!) But the shingles seemed to kick it all off - I was never ill before then.

I'd definitely discuss a course of oral antivirals, however, they're one of the medications where the effective dose is closer to the dose that can cause liver harm than other medications, so if you do have any other underlying health conditions remind your GP.

Thanks everyone, some great suggestions here, and glad (but sad) to see this isn't a totally abnormal thing to happen. Think I am very run down, diet been terrible and had a break up few months ago. Got one more tablet to take today to finish a week course of antirvirals (4th course since Feb) but still breaking out in blisters and it is moving to other areas... suppose 111 will be open for advice just got to hope it settles. My house is totally trashed too and really need to sort it out before kids come back from dad's tmrw (clothes toys over every surface seems!) but worried about overdoing things ugh and setting it off more. Thanks for all kind responses, I am feeling tingling over neck now so will have to see what I wake up to tmrw boo hoo. Who would have thought chicken pox could come back and do this.

@ShinglesHell I take 500mg of valaciclovir daily for 12 months then 500mg of aciclovir for 12 months and 5x 500mg of whichever I'm on at the time during flare ups.

To be honest I still have major outbreaks several times a year even on the daily dose as well as having mini outbreaks at least once a month. I'm scared to stop the daily dose just in case but not sure how much good it actually does do.

I really do feel for you, I don't think most people understand just how deliberating things like this can be as well as the "embarrassing" physical side of things.

Diet and exercise can help in part but you can't help get run down at times, it's an unfortunate part of life.

The only advise I can give is to speak to your GP to see if a daily dose may help, even just in the short term whilst they do investigations to see if there is an underlying reason and try and do whatever you can to keep yourself healthy whilst not giving yourself a hard time when you do have an outbreak

All my outbreaks are triggered by stress. if I’m very stressed I get several outbreaks within a month and I feel lousy. Mine isn’t as bad as yours sounds though. I get them on my back and aciclovir clears it up. I am very lucky that I don’t have the post viral nerve pain. I’ve had outbreaks for the last 20 years.

I got shingles once two years after a stem cell transplant for blood cancer. After my transplant I had to have all childhood vaccinations again and a few days after MMR I got shingles on my face. Was very unpleasant. It caused Ramsay Hunt Syndrome too and damaged a main nerve in my face resulting in facial palsy. The paralysis has improved but not completely. I took acyclovir but possibly not soon enough.

The shingles vaccine would be a good idea but you would need investigating first for why this keeps recurring.
The vaccine is contraindicated in people with immune system problems as it is a live vaccine. So if your immune system would not cope with producing the antibodies to the vaccine it would do you more harm than good.
Yes the NHS funds the vaccine for those aged between 70 and 80 but it's worth asking your GP the question as they may be willing to give it you based on clinical judgement, if not pay privately.
Otherwise a daily dose of antivirals seems like a good idea.
Definately ask for a referral though as this can't continue without proper investigation. I had shingles once and it was awful so my heart really goes out to you.

Thank you @PearTreeBoat @Zoorhik and @MyNameIsArthur for shared experiences, gosh these damn viruses!! Well not best news, finished last day of antivirals (7 day course) on Friday, yesterday erupted blisters appeared under eyebrow (shingles still active seems grrr), on chin, and now today woke up with a new saucer shape indent where a blister must have appeared overnight on my neck... so I have fininshed the meds and blsiters still appearing -- that isn't good is it?! Would they hospitalise me do you think/has anyone been hospitalised with it? Thinking if not responding to meds (tabs) maybe through IV might work. Hate hospitals but my right eye is now twitching & worried about ramsay hunt as @mynameisarthur has shown can be serious :( also been up all night with chest tightness contantly on blue inhaler every few hours, this has happened before though (diagnosed asthma just over a year ago) poor 9yr old had to get up with 4yr old, I couldn't get up til half 10. Not sure if to call 111 or wait for GP on Monday. Feel so tearful was fairly well til last year or so now shingles (and asthma) causing me so many problems. Though sure the night time waking with asthma is dragging my immune system down, like having a newborn!!

In terms of other tests the only thing flagged so far was ESR which is to do with inflammation, mine was 27, should be 19 GP said. But could be anything that could cause that so doesn't give full picture. Also had a full CT chest scan done last month because of this sudden adult onset asthma but that was clear which is reassuring as another thing I have had is bits of blood coming up in phlegm on and off since Jan.

Thank you so much @StarlitTrees the GP have been on to infectious diseases dept for a referral but they wont see me without a swab for shingles virus done first, practise nurse tried to take one last week but struggled :(

Struggling to carry on like this... I teach at a uni and next two weeks are marking period as well plus meant to give a paper I have not written... sorry for moaning everyone and thanks for the support

Hi OP, I have had similar problems to you. Also on my face, you have my sympathies.

If it is not responding to oral antivirals then IV is the option, and if they are over your face it is really important as they can cause all sorts of problems to hearing, sight and even brain. The antivirals also greatly reduce PHN if you get enough of them soon enough.

I also have a prescription wound gel made from Manuka honey. This really helps take the sting out and stops them getting infected.

Going forwards, it's common to take Lysine supplements and daily antivirals. Please ask your GP about the Shingrix vaccine. This is not the standard one offered to over 70s but a new option. It's meant to be excellent, and it is definitely available privately in the UK.

Hi OP are your blood counts normal?

Hi @alpinia thank you for response, I will certainly be looking into private vaccine! Have you ever been put on IV drip for antivirals was it more effective? Eyesight seems ok despite blisters over eyelid/eyebrow but getting quite bad headache today so worried more are coming. Think will try and hang on til tmrw to call GP as if call 111 might try to send me out hours this eve and on own with 2 kids (single parent with no support), their dad might take them if admitted during school hours tmrw. I've had 4 courses of antivirals sinces Feb, I just cannot understand why this is not shifting?!! It just seems to be shifting dermatomes and moving from one part of face and even crossing sides.
I have got the lyseine and been taking elderberry and tumeric and d3 and b vits too! I actually have some manuka wound gel in for other stuff -- will use! The odd (but good thing is) they don't seem to be the scabby type wounds one would see when google image "shingles face" just seems small saucer shape blisters that erupt and leave a small shallow wound that just kind of leaves a faint scar without really scabbing, just like dry skin. The ones on tongue and gums are awful, and I can see scars on tongue! Attaching a pic of ones from necks to see if anyone who has had it can confirm theirs was like that?