It’s been quite a ride…my ear started bothering me a bit on Monday . Just a small uptick in tinnitus which I tried to ignore. By Tuesday I was a bit worried because I have had total hearing loss in the past due to auto immune attack which was only (partially) restored due to mega doses of steroids. By Wednesday my face was tingling and I took myself to a and e with my letter from my neurologist which basically says “if this person turns up here with this letter she really needs to see a neurologist right now!”
They were amazing and in the end it was decided that ENT were the people I needed.
A hearing test showed that whatever was going on it wasn’t sensorineural hearing loss.
by the next day when I was pretty much crying out in pain with the stabbing in the ear I looked in the mirror and there was the shingles rash under my chin. It is all over the inside of my mouth so eating is incredibly difficult. I am of course taking the aciclovir anti viral meds and slept almost constantly yesterday.
today I don’t feel so systemically ill but the pain is still through the roof.
Does anyone have any helpful experience with shingles? I can’t take anti inflammatories and the codeine the hospital have me made me feel sick so I’ve just been taking paracetamol. The eating / mouth situation is particularly grim as i am too skinny as it is.
Love
Bon x
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Bon1
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I’m sorry you’ve got shingles and are having an awful time with it. There have been lots of posts about shingles in the past so if you put it into the search box then filter for NRAS they will all come up. I hope you get some relief soon🤗
You poor soul. Shingles pain is notoriously awful. My Mum had it in her head affecting the side of her face and was in agony. Have you tried soft cold things like build-up drinks, yoghurt or jelly? Easy to swallow and no chewing involved it might help? I'm sorry if I'm preaching to the choir.
I think so…I’ve got a sainsburys order coming this morning with a ton of tinned soup and yoghurt. That sloppy filled pasta might be just about manageable but I can’t open my mouth very wide. I am being so grumpy I think my next post to NRAS might be to ask advice about my forthcoming divorce 😂😂😂😂😂
My husband is still milking the I’ve had heart surgery this week. He has but the plaster is off from 2 stitches and if he wants to play golf tomorrow then he has to cut the grass today. Lol x
Darling I had it on my face/in my mouth too. Total sympathy. Nothing really got the pain tbh but I did use nefopam, which helped a bit. I can’t take other opiates. Soup through a straw?
So sorry you’ve got shingles and are in so much pain. Hopefully the Acyclovir will start to dampen it down but the pain is excruciating. I had it about nine years ago round my breast and ribs and on round my back and a friend of mine has it on her face, eye and scalp as we speak.
It makes you feel rotten and all I can do is send sympathy and tell you it will pass but rest lots and get over it properly before you start life again as you can feel pretty washed out for a week or two. Keep taking Paracetamol maximum dose - it’s a b…….r when you can’t take anything else (I can't either) and I hope you feel a lot better very soon.
Just thought -good old Calamine Lotion may help. You may look like you’ve been badly painted with emulsion but Iseem to remember it took some of the pain away when I had it. Just seen Prof99’s post and oat baths is a really good suggestion too. Glad you’re feeling a bit better.
Hi there, I am just recovering from Shingles too. I have it all along the bra line on the left hand side of my body. Started with muscle pain that I thought was from a new exercise routine, then I thought I’d been bitten, but then the rash went all around one side of my body. I described the pain as like really bad sunburn – as I felt my skin was burning. After I’d had it for a week, an ex-colleague who had suffered with it in the past, recommended to take Oat Baths – and I was amazed at how soothing they were. She said, put a couple of handfuls of Porridge Oats in a sock and run the bath water through the sock. Then tie a knot in the sock and use it as a Poultice, dabbing it on the effective areas. Obviously, that is for external blisters – but you could try using Oat Milk as a mouth wash to see if it gives you some relief from the ones in your mouth. My heart goes out to you – Shingles is thoroughly horrible.
Oh gosh, what a nightmare for you to be in so much pain. I can’t make any better suggestions than what you’ve had already but I am sending you masses of sympathy. I’m very impressed with your neurologist’s letter - although that probably means you have some other horrible condition if you are equipped with something like that. You will need plenty of rest so don’t divorce or murder that other half - you will need his help 😉
Thanks F and C! Yes the letter is because when I lost my hearing a succession of well meaning but ultimately clueless medical practitioners kept sending me away, thereby nearly missing the very time constraints led window for retrieving sudden hearing loss with mega doses of steroids. I asked my neuro for the letter so that I would never have to go through that again! And you’re right - I do t have the energy to murder him indoors today. Lucky for him!
I had something like that - I was driving home from work one afternoon - I can even remember exactly where I was - when I went completely deaf in one ear.
When I finally consulted Dr Google I realised that I ought to have been seen at my hospital, I t(ink within five days. Anyway, I got t the doctor, she asked dates, I saw her counting the days on her fingers and said ‘too late’. My hearing came back but I get a lot of wax and last time I had my ears vacuumed I got a text from the technician because she had seen ‘something’ in that ear that hadn’t been there before and she wanted to refer me.
So far so good, my surgery emailed to say they would refer me !!!!! Then I got a strange appointment with a message not to turn up on the day or phone as it was just a ‘holding’ appointment to get me in the system, hen I got an email to ask if I still wanted the appointment - as if! Loads of questions including how far was I prepared to travel to see someone. I opted for 0-30 miles but there were other distances there too. Still no appointment. Think I need a letter like yours.
Hope yu can get something soon to help with your pain x
I have had shingles three times, so sympathise utterly. Best thing for the rash was capsaicin cream........only thing that touched the pain, doctor gave it to me as a last shot.
Hi Bon1, sorry to hear that you are in so much pain & discomfort from having the Shingles. I had the Shingles many years ago. It was very severe and have been left with nerve damage to this day all down my left hand side.
The only thing that helped me cope with the pain was Tramadol!
Yes been on it since Friday but woke up today and the rash is huge now! I had kind of expected it to at least stop growing 🤷♀️the nerve pain is reduced and that’s a huge relief x
I ended up with vestibular neuronitis basically the crystals in my inner ear decided to jump out of their craters. Felt like I was on a boat! Consultant gave travel sickness tablets which sorted it. Hope you get better soon 🌻
When my Mum had really awful shingles (she was mid chemo at the time) she found Aqueous Calamine Cream by Care+ really helped. I know it's no use for inside your mouth but may help the external areas.
If your mouth is very sore ask about gelclair from your gp and trying taking your paracetamol dissolved you can take a single one every three hours rinse it well round your mouth before swallowing there is also difflam which has a local anaesthetic
I had shingles many years ago. I had the stabbing pain in my ear and because I had no rash was rushed off to another hospital several miles away because they thought it might be mastoiditis. Fortunately it wasn't. Up to that day I didn't know you could have shingles without the rash. I hope your pain subsides soon.
I had the stabbing pain before the rash. It’s all just horrible isn’t it? The stabbing pain has gone now to be replaced by a constant duller pain instead. And my head and jaw are agony.thanks for your reply xx
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