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.

@MyNameIsArthur they did bloods, only things flagged were ESR (think how fast blood falls) were 27, should be 19 max, apparently shows inflammation in body, and also white blood cells (monocytes ones) bit up 0.9, think max range should be 0.8 -- but suppose body is fighting infection!

I just want to sympathise - I have had shingles once - on my face and right by the optic nerve - it was the most awful thing I have ever had .

Yes IV helped, but it was a few rounds of them. I was admitted as it was all getting out of control, like how you describe yours.

For the ones in the mouth I got this topical anaesthetic called HurriCaine that kills the feeling a bit.

Mine started after having glandular fever and I think I've had 7 or 8 rounds of them now. Good thing is I recognise it immediately and go directly to get antivirals so it never gets as bad now. They are always convinced it's HIV with repeat shingles...

@alpinia sounds awful! getting horrid dry mouth after tongue ones, even saw some blisters above teeth on top gums eek. Now getting strange audio in ears. They did hiv test last time when just had it twice, it was neg, have repeated it but not back yet. Practically nun so think other cause. Sadly they seemed reluctant to anything further til that is back! Like no matter what cause is clearly doing damage need me in somewhere other than gp on phone and photos over econsult (ugh eye roll) though did see one (junior) gp f2f last week.

Are you under a haematology consultant?

You poor thing. I was absolutely miserable after one bout of shingles, never mind back to back infection.

Mine was on my face too, all around my left eye. I only just got on the antiviral meds in time as my gp was being an arse about seeing me. I had 10 days of acyclovir.

About a month later though, my left eyeball had started to swell and was so painful. I ended up having a further 8 weeks of treatment, (acyclovir, anti viral eye drop, steroid eye drops and dilating drops.) The nerve in my eyelid is shot so my eyelid droops and my iris doesn't react as fast as is should in bright light.

3 years down the line, I still get PHN, I always say that it's voldemort trying to read my thoughts.

Am currently your shingles twin. 18 rounds and counting. I've been told I can't have the vaccine. Totally shit. Been off work for weeks with post viral fatigue from the last lot.

@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.

It is 'unreal'. Homeopathy isn't a scientifically valid treatment. Placebo otoh is well attested.

@MyNameIsArthur no should I be? Those were general bloods back just last week requested by GP, they also did Immunoglobulins ones too (to see if immune system compromised) Nurse had a quick look whilst doing swab and said they were back (Immunoglobulins one) and didn't see any flags on system, so must not be immune compromised then? Will need to see what GP says though sure nurse knows. All so confusing. Only flags were ESR at 27 and monocytes 0.9 but that could even be in response to shingles or my asthma I guess... still waiting for hiv test results back but was neg last time they tried that after double (but much milder shingles) a year aside from this recent 4 x times bouts ughhh.

@MrsMonkeyBear oh my goodness!!! You poor poor thing, I feel so sorry for you, that is awful! Seems complications after finishing a course of antvirals are not so uncommon then. I have been wearing contact lenses still, do you think they might spread it? Have some blisters by eye. Left eyelid has only swelled once (first time ever had it) but now get black floaters in vision from time to time since

@Rubytinsleslippers oh my goodness!!! 18!! That is awful, I assume your GP has done tests etc and and nothing obvs causing it?? Found some forums where it seems a few people have this recurring shingles, but docs don't seem to believe it. I suppose that was orig aibu, but also posting here for traffic! Only had 7 days antivirals, maybe they should have had me on 10, as blisters still appearing days later after fin course on Fri.

@shinglesHell I would probably avoid the contacts, i stopped wearing them when I was "infected" as they were too painful.

I also suggest going to the opticians as they can take a proper look into the eye and some can even prescribe medication (and not just eyedrops.) They referred me onto the eye hospital for monitoring (hence the 8 weeks of drops and drugs.)

Yeah. As I see different GP within the practice they all say 'it can't be" then when they see it say ' oh, it is'. I have had bloods etc but nothing showing. Been referred to hospital now but they want me to get another bought so they can swab etc and decide if it is shingles ( it bloody is ). Am so sick of it and tired, fearful I get it again but almost want it so hospital can sodding see it... It's been getting worse every time.

I don't know OP. You mentioned earlier about blood in phlegm which made me think your platelets might be low, but am sure they will have tested your platelets. I would have thought with the amount of times you've had shingles, you must have a compromised immune system and maybe haematology might be looking into it. Anyway, it sounds like the tests you're having are comprehensive and they've tested your bloods. I assume they've tested for anaemia. Why are they testing for HIV?

This thread resonates with me so much. I had recurring facial shingles that kept getting infected and I had dark thoughts when at my lowest. The doctors didn’t know why I kept getting it, all tests were negative. I had dealt with a lot of stress which I think triggered it. I wasn’t old enough at 45 to have the vaccine but I found a private clinic in London that agreed to give me the Shingrix vaccine due to the number of times I kept getting it. This changed my life 2 years ago. I haven’t had it since and it was the best £500 I’ve ever spent. It is better than the one available on the NHS when you reach a certain age in terms of reducing the likelihood % of getting it again. The post neuralgia pain has significantly reduced too. I send my love to anyone suffering with this and happy to talk over PM if anyone needs a shoulder x

I had shingles twice in two years, no where near as bad as yours, but the doctor gave me the shingles vaccine as soon as I was healed from the second time.
Nothing since.
I was way under 70 I was 44. But his rational was I can't keep getting shinges every year or two. I had a toddler in the house to care for. So push the doctor as much as you can, you have resposibilities and can't keep getting sick like this.
Maybe they will let you pay for it if you can afford, or see a private GP and get it from them if you can afford to.

Thanks @MrsMonkeyBear saw eye consultant last week as already under one for suspected glaucoma and freckle on back of eye (and they said actual eyes looking healthy) but now have blisters quite close ugh.

@MyNameIsArthur thank you, I assume platelets come up under general blood count tests? They did those. It is strange I never cough or anything just seems to come up as excess mucous with blood in (about a few times a month) I can feel it then get sensation of needing to spit it out, have even wondered if coming down from sinus. Ah the hiv thing is apparently as it is common for people to have repeat shingles if have it due to the way it impacts immune system. But they already tested me for it once before. They did some blood tests related to immune system. I must say have been under severe stress, also had AZ vaccine few days after first bout of shingles this year which had been v mild then all hell broke loose followed by 3 times way more aggressive shingles attacks.

Hi @Beamiracle so sorry you went through that, it is such a lonley experience isn't it? So glad the vaccine helped. I will see what happens this week with GP and how the shingles behaves... would like to send you a DM once hear more from docs if ok.

Thank you for sharing your experience, I felt so alone in all this until I came on here! Family and friends dont understand.

Thanks @FedUpAtHomeTroels I got bupa recently but dont think would cover private vaccine as had past history of shingles. Think will push gp or go self paid private. Can't deal with this on top of chronic asthma too which came into my life a year ago (joy!) actually read a med journal saying more likely to get shingles if have asthma which was quite interesting. It is so tricky, I'm a single parent to two young kids it is very demanding and also finishing up a PhD (meant to be) and part time teaching. Realising how important it is to avoid stress.... might suspend for a few month and just focus on health

@HmmmmmmInteresting

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

You can probably get it privately.

“ The vaccine to protect from shingles is not licensed in the UK for use in those under 50 years of age. If you are over 50 but under 70 and think you are at increased risk of shingles discuss this with your GP, so a decision can then be made based on an individual clinical assessment“

@ShinglesHell

Hi *@Beamiracle* so sorry you went through that, it is such a lonley experience isn't it? So glad the vaccine helped. I will see what happens this week with GP and how the shingles behaves... would like to send you a DM once hear more from docs if ok.

Thank you for sharing your experience, I felt so alone in all this until I came on here! Family and friends dont understand.

It is lonely but you’re welcome to DM me when you’ve heard more from docs, you’re not alone in this anymore x

I had it twice in six months last year and it was truly horrific. The pain was awful. I was very very run down after having my baby and I assume that’s what set it off, I was 32 at the time and hadn’t really had immune system issues that I know of so my gp was very surpised at me getting it. I hope to get the vaccine after my next baby because I couldn’t face it again. No useful advice but you have my sympathies it’s dreadful!!!

They should do along with haemoglobin, white cells, neutrophils and others. Sounds like they are happy with your platelet counts so low platelets can't be the reason for blood in mucous. Leukaemia had crossed my mind because of the repeated attacks on the immune system but that would have been picked up in your blood tests too. As you've said, you've been under severe stress and that with your vaccine would have put a lot on your immune system so is likely to be that. I'm sorry you've been going through this and continue to do so with no end in sight yet. I think they should give you the shingles vaccine given the amount of times you get it. Hope you'll be okay soon

@MyNameIsArthur you were very right to point this out to me! Thank you, I asked the gp today (was in again) re platelets & fbc etc, said all normal, only thing is monocytes part white bloods i think at 0.9 slightly high end, but all others fine aside from esr at 27. BUT one thing is I noticed blood spots under skin on upper arms (pin prick size) and few on chest and torso too around 6 weeks ago I'd say all still there, and that looking on net can be sign of leukemia blood like pin dots on skin (as well as other things I'm sure) when GP looked in mouth to see about the shingles I had had there, there was also same small red blood dots on end of tongue she said!! So I am to have repeat bloods this thursday all the fbc etc again, but she has also added a form on for clotting tests. She didn't seem to worried re leukemia as said neutrophils etc all ok, but think those blood spots must be a clue in something surely. Not loads but they were not there before. HIV test came back neg as knew it would, so now all tests back they have referred me to infectious diseases. I am still breaking out in new shingle blisters even today despite finishing antivirals on Friday just gone, but gp didnt give me more more meds today as she couldn't see it very well and already had 4 courses since feb, so left to suffer lol wtf. At least 4 new blisters today on face leaving shallow small saucer like wounds behind after... so stressful. Looks like they'll only admit me if it maims my eyes or sometihng despite the infecion still not cured! :(