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.

Thanks for sympthy @Yummymummy2020 it is def a illness of the run down isn't it!

It's a horrible thing OP. L lysine was my tip for if you feel anything coming on in future. But see you've mentioned that already.

I didn't want to panic you OP but felt I should mention it. The blood spots are called petichiae . I guess if the medics aren't too worried about them and your blood test results, then unlikely to be anything sinister. Am glad you are having repeat tests though . However with everything going on with you such as the shingles etc, you'll be desperate to know what's causing it all and for it all to go away! Am pleased the hiv test was negative. Hopefully infectious diseases can figure it out. Am sorry the GP has left you without antivirals. Am not sure leaving you without any is a good idea. I'd want to have some at home just in case it glares up more. Am sorry you are suffering. It must be so awful for you

@MyNameIsArthur thank you, I know I was like well still getting blisters and she was like oh well... hmm ok! I'll just get on some herbal meds instead lol googles antiviral herbs Had a few come up yday, but today seems a bit better despite lots of tingling around lower left eyelid going to bed. Had bloods taken before, looked at forms, repeated esr, crp this time too, fbc, and did a blood test for zoster plus another form that said (d?s) clotting form with words priority on... prob as they have short time frame to test it or something. That'll be for the petichiae I imagine. Due to get 2nd dose AZ vaccine tmrw have put back by a week ... thanks for all help, and sorry if have been high maintenance I know you have replied to me loads ! will report back to this thread woe betide anyone else should suffer my shingly fate

Hi she doesnt sound very reassuring! Every bit helps I suppose. I was glad I had some acyclovir left over from my transplant that I could take as it prevented the paralysis in my face being a lot worse. It must be so painful for you and getting you down. I hope they figure it all out soon and give you some stronger painkillers. Thats okay. Thats what we are all here for! And no you've not been high maintenance. Keep us updated as to how it's all going

Sympathies to all those who have these recurrent attacks. I have had mild shingles about 5 times, and am constantly having cold sores. Then I started getting swollen sore lumps all around my left eye, which I am sure are all connected. I take lysine, and ice the area when I can. Antivirals seem to stop or slow down the attacks.
Sounds like more investigations are needed, as PP have had.

Thank you @MyNameIsArthur so good to know have you lot here! Really has got me through the last week or so. Went out yday eve for an art thing and now had to go back to bed today as so fatigued and been getting servere neck pain and pain under chin, hopefully not a sign of another attack but "just" [eyeroll] PHN. Clotting screen blood test csme back normal which is good GP said, just the other repeats to find out.

Oh @efeslight so awful isn't it? We must be so herpetic lol (but not lol) [sadface] will take more lysine today. Might up to 2000 whilst still suffering with it, have appt now on 17/06 with infectious diseases dept but will be calling up each week before to see if any cancellations, never know!

@ShinglesHell so sorry you are still in the thick of it.
It's so frustrating when bloods are clear - well not that you want anything but if there was something to treat would feel more proactive.
Interesting you say neck pain, I get that too. Muscular rather than skin tingling.
It really is a shitty virus.
Sending loads of sympathy.

@Rubytinsleslippers oh the neck pain (cries) so sore!! Same here like have pulled neck or something, the other bloods have some inflammation markers when i orig posted (nothing scary but not normal either) and some raised monocytes, so they were repeated last week to see if any change, but the clotting one was urgent as had blood pin dots under skin, think might just be from AZ as mostly by that arm so not related.

Be interesting to see what this week shows now the gp has left me off antivirals, depsite being symptomatic... fingers crossed the active blisters settle/dont reappear. Hope you are doing well!

Hope you start getting better.
I wondered if the neck was glandular - I feel like my neck is swollen and sore to move - like pulled and my face has been puffy this time too. I wondered if it was my glands trying to deal with the virus?
Hopefully the tests help in some way.
I am surprised they have not given you more tablets as blisters still erupting.
I got a cream previously as scabs were infected ( nice ) fucidian (?) My rashes are all quite localised.

You sound like me! 17 cases In 10 years. It's horrific. All my sympathy. I now know the slight feeling before they errupt and start antivirals asap! I presume you have been checked for lupus? I now take prophylatic acyclovir after doing my own research and discussing with my gp. Ironically since being pregnant its the only time I havent had an outbreak. During an outbreak l take 800mg acyclovir 5x /day and cocodimol if mild, codeine or even tramadol if severe.

@Rubytinsleslippers yes I think it is the glands in our neck reacting, had it last time followed by blisters ;/ plus had lumps under arm too! I am noe using colloidal silver spray on face and neck as meant to be good for shingles and antiviral, very cooling at least and feels better after spraying. The gp said I already had 4 course anti virals since feb so was reluctant as didn't seem so bad day I was there (externally) will keep an eye on them. But very tingly and in pain. Hope you feel better soon!

@Fishingforhappiness omg you poor. poor thing! Will look into prophylatic acyclovir. Not sure if checked re lupus but they did some bloods to do with immunglobulins which I believe look for auto immune sort of stuff but might be wrong. If more blisters mon will get a 2nd gp opinion on anitvirals use, as right eye twitching, can't be good sign re nerves! Hope you are doing well

Hi! How are things now?

Hi @MyNameIsArthur not too great really, last week felt tingling sensation by legs and thought oh surely wont have moved from head/neck to other parts of body... saw bit of rash on one knee then seemed to go. Then night before last felt tingling on inner left wrist, red bumps then lo and behold few saucer shingle like scars left next day. Still getting new blisters on face all week too. So the original head shingles still there and now migrated to legs and wrist...!! This morning blood in spit again too, plus anther bigger petechiae spot on tongue which came then luckily went. All so bizarre! I'm not on any anti-virals or anything still, but haven't told GP about finding rash on legs and wrist. I have to call back next week to see if my repeat bloods were ok so will say about it then. Hope you are doing good :) my face must have about 40 or so scars now too btw since all these attacks ;/ am worried how they will heal when skin tissue starts moving after it (hopefully) goes for good. Look like a little lizard has been taking bites out of my face :(

Hi! I'm so sorry you are still dealing with this. I'm worried that it is spreading further. I think you should dial 111 and get back onto anti virals asap rather than waiting until next week. Tell them about the bleeding and petichiae too. Get some bio oil as that helps reduce scarring

You poor poor sod. Nothing to add but a lot of sympathy. I’ve had shingles 2/3 times now and I wouldn’t wish it on my worst enemy. It’s brutal. You’re being so incredibly brave. I hope some answers are found for you.

Sorry to read your update too. I don't have experience of such severe shingles but I think more antivirals might be needed

Hi all, since posting noticed fluid above eyes kind of forcing eyelids to lose definition yday eve, and right eye lid was so swollen lost the crease of eyelid! I called 111 and they said someone would call me back within 6 hours... noone did!! Bit strange. Seeing black dots in vision from left eye today. Anyway the chemist a prescription of antivirals from last month when I got double presribed talking to diff docs so picked them up when remembered that and have started them today without any medical advice... as noone has called me :s just worried as 5th course of antirvirals in such short space of time if may be harmful to liver etc. Not sure if should try 111 again and explain nooone called as maybe I should be seen in person? Was up all night with bad tight chest too -- asthma prob stress related to all this ;/ sadly beginning to think the stress of one flaring up triggers the other.

ps the new shingles scar on my wrist from the spread to there a few days back is in the shape of a heart... shingles REALLY loves me lol (not)

I had a spell like this.
My hb was normal but ferritin was very low - less than 7.
I had iron infusions over several years.
The shingles outbreaks have stopped since my ferritin is now within a normal range.
I do get cold sores particularly if I eat even a small amount of cheese or chocolate.

It’s miserable for you, I do sympathise.

hi @WhataMissMap oh so sorry to hear that? how long did it finally take to go for you? have you had any trouble since? they did full blood count not sure if that would check iron etc. It so terrible and frustrating when it doesn't go! Had it pretty much since march now new blisters every day :( 111 said they hadn't called as got 24-48 hr delay on 6hr call backs wtf....so I should have been called back in 6hrs yday but they are sooo busy it is nearly 2 day delay lady just said when I chased it up!

@ShinglesHell how are you feeling now? That sounds horrendous, has anyone got back to you?
I think you need seen asap.

hi @Rubytinsleslippers no not yet and I called before to chase 111 referral from yday which was meant to be call back within 6hrs (no call) and she said 48hr delay!

so used babylon private gp app as worried, had a phone call with dr he said need to be seen espec as swelling by eyes and also said he think i need a neurological assessment as had tingly feeling by groin and knees too and sometimes shingles can affect brain... great!! said he cant do it, needs to be in person with gp out of hours which can only be through 111 - who are too busy.... just did my own neuro check watching a video from youtube and recorded myself following my own finger with my eyes lol -- you know til a real dr can do it ughhh. feeling stressed now :( on my own too :/ kids with dad. almost tempted to text and see if dad can keep them extra tomorrow as i just dont feel great and dont think can look after two kids on own all tmrw without a proper resolution from out of hours. they would prob moan though

Definitely get dad to keep kids if you can. Hopefully your ex is understanding.
Don't freak yourself out with googling and YouTube, I am the worst for that and have confirmation bias where I twist whatever I read to suit my symptoms!!
Keep ringing GP today, push to see someone real. and