I’m Griggser’s wife and I’m just updating on his current condition as I’m really worried at the moment. I know he posted at the weekend that he had a pain in his eye socket and head and hoped it wasn’t GCA. After a very difficult few days it has been diagnosed as Ocular Shingles. We didn’t even know such a thing existed. He is in horrendous pain in his head - we have been in and out of A&E twice in the last 48 hours with the pain - nothing seems to touch it. He can barely speak and has been in bed since then trying to sleep. They have given him anti virals, amitriptyline and two different eye drops. I have just today picked up some liquid morphine for him as nothing seems to be dulling the pain. They say he has to wait until the drugs start to work which could take a few days - I feel so sorry for him.
I just want to say that we automatically thought it might be GCA and never considered anything else as there were no normal shingles signs that we considered. He did and does have a small red patch above his affected eye but we didn’t think anything of it. He has always been healthy (although in pain) with his PMR - this is a real shock ..... although he did have his first AZ COVID jab just over 2 weeks ago????
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JackyGT
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I am so sorry to hear this. It sounds dreadful for Griggser and it must be hard to watch someone suffer so much pain. Sending you and your husband heartfelt sympathy and all good wishes for successful relief of pain and improvement of symptoms very soon 💐
I'm so sorry you've had to post on Griggsers behalf. It sounds like he's in a lot of pain, I'm so sorry to hear that and hope some of the painkillers can take the edge off soon.
Thank you for that DL it is helpful. They didn’t give him any leaflets or say much about it. But the trouble is ... I couldn’t go with him to A&E or GP or Consultant appointment because if Covid and they may have told him facts but I don’t actually think he could take it in - he seems in so much pain in his head he can’t think. Of course I have been on Dr Google and while it does give you facts, it’s easy to be distracted by worst case scenarios.
I’m thinking it has hit him so hard because of his PMR but also for 3 days over the weekend he said his eye hurt and insisted on waiting till Monday (to see if it would get better) before he spoke to GP and then diagnosis of shingles and anti viral drugs didn’t happen until Wednesday by which time I think it had really taken hold. I’m just fingers crossed one of the drugs has some effect on him soon.
Oh MrsG - I'm so sorry OUCH!!!!! Shingles is bad enough but the occular version doesn't bear thinking about!Tell him to get well soon and be a good patient
Hi. I too had occular shingles, yes the pain is horrendous, I’d had eye shingles before, that covered my eyebrow forehead some of my scalp and nose, that took a long time to clear up, the second time was occular shingles, the pain was terrible, every time I blinked, I had no idea what it was until I went to the eye hospital.
It didn’t last too long so maybe Grigger will get better soon.
He needs to just take it easy, good wishes that he gets better soon.xx
I’m so sorry to hear about Griggser - he must be in awful pain...
Encourage him to take the Morphine as prescribed, it will make him more comfortable & once the Antivirals kick-in hopefully he’ll start to improve. Have they given him the Amitriptyline to take at night? If so take by about 7pm/7.30pm as then he won’t feel so groggy the next morning.
Please give him Everyone’s Regards & Best Wishes 🍀🙏🏼🍀
Thanks Mrs N - Yes they have given him Amitriptyline amongst other stuff. Update - it got so bad in the afternoon I had to call the Gp out. Brilliantly he was there within half an hour and says he thinks OH has something called Tic Dolouroux and prescribed Gabapentin as well as doubling his morphine and his anti virals. So followed mad dash to Tesco’s pharmacy and gave him first dose of that. I am crossing everything that he gets some relief by tomorrow because this is so horrible.
What's the matter with calling it trigeminal neuralgia which far more people have heard of! It is reputed to be one of the most excruciating pains you can develop.
I am at my wits end .... he says the pain is worse this morning but he does seem able to dose/ sleep a bit. I don’t know what to do now. Is this ‘normal’ trigenal neuralgia or is it something more. I don’t know whether to call the dr again or just try to wait it out to get more drugs in him. Yesterday the dr said he knew it was painful but the drugs should ease it but so far they are not
Gabapentin takes a while to work but it is a good drug for nerve pain. Sometimes just air blowing past the cheek can trigger the pain as well as brushing teeth, eating, and drinking.
Why dad had this and in the end they had to kill the nerves in one side of his face as that was the only way to get any respite from the excruciating pain.
Yes they did, he ended up having 2 ops as the first one, which he was under general anaesthetic, didn’t work so next time he had to stay awake so they could ensure they got the correct nerves. This was quite a long time ago though.
Oh Jacky, shingles in the eye - how horrendous! I have regular shingles at the moment and that is extremely painful - but in the eye - I just can’t imagine it. I just hope relief comes soon for Griggser. 🌻
Good morning Jackie and Grigger, I'm relatively new to the forum but can't imagine what Grigger is going through. My Dad had "normal" shingles on his head and that was awful, the thought of it in the eye, well enough said, I can only add my best wishes and hope that Grigger gets some sort of relief soon. At least the doc sounds on the ball and doing his bit to help. Hopefully you are both getting some sleep tonight.
How horrible for him it must be agony.I am only on low dose steroids now but have been plagued with shingles. This Xmas it blistered from eye to chin and my face felt on fire.
The job of the immune system is to keep herpes zoster at bay after it lies dormant in a root ganglion after chicken pox.
Once the immune system is suppressed it sadly is not held at bay successfully hence we pmr sufferers get the double whammy.
They have to wait a year from onset of shingles bout before vaccination because it is live.
I wish him all the best it sounds horrendous.
He might feel a bit weak and depressed after and floradix has helped build me up again.
Hi JackyGT it sounds terrible you must be so worried. I do hope it gets better soon or at least less painful. He is lucky to have you by his side. Take care both of you sending virtual hugs.
So sorry to hear about Griggser I do hope it clears up soon. I had shingles in my eye and side of head some years ago when didn’t have PMR and it was horrendous. Sending you both hugs and thinking of you both, hope he well soon
I was sent from doctors to eye infirmary they gave me anti viral drugs, painkillers (codeine phosphate) and Zovirax (to put in eye- it’s a diluted dose that they use for cold sores) . I wasn’t allowed to drive until they’d seen me again and had another eye test. . It took about 4-5 days for everything to kick in but wasn’t kept in hospital. I had trouble with cold weather afterwards as it affected the eye and the side of my head like needles snd pins but that was all. I don’t think mine was nearly half as bad as your poor husbands and I didn’t have PMR then. I hope he recovers soon and the painkillers kick in it’s a nasty thing, my heart goes out to him and to you, it isn’t easy watching those you love in pain
Thank you greengages. It is so dreadful to see him in such pain. I have explained to him that the drugs will take a while to kick in but because of the pain he doesn’t seem to understand me. Anyway I have called the doctor again and am waiting for a call back. Much appreciated your comments
Thinking of you both and hope he gets some relief from the pain very soon it’s difficult to think when in such pain hopefully the doctor will be able to sort it out when he calls you. Take care
Thinking about you both. It is heartbreaking to be with someone you love in pain. Everything is so much harder with COVID and you often feel lost. It sounds as though docs are trying to sort it now. Take care. Jen
I’m so sorry to hear of your husband's pain, Jacky; it is worse watching someone you love suffering than it is suffering yourself. I was interested in your story because I am almost sure that I developed mild PMR as a result of the shingles vaccination. Two weeks after it the pain and usual symptoms of PMR started. Early treatment with steroids and I’m now fine - but I continue to be interested in that PMR/GCA link with shingles, as before the vaccination I was absolutely fine. Hope your husband’s pain eases.
So sorry to hear this, if it helps my friend is just getting to the exact same thing ! She was in a terrible state , but after about a week, the drugs kicked in and she could manage her pain. Her eye is almost pack to normal now. Hang on in there ! Its awful to see a loved one in pain, hope things improve quickly . Best wishes Viv x
She went regularly to hospital, but didn't stay in.She was and still is being monitored .Hope this helps, she did say it was one of the most painful things she's had .
Oh my goodness, poor poor both of you. You must be feeling so helpless. I guess the shingles can always be lurking in your system. I had it again about 18 months ago but so fortunately not in my head. However, a little like your husband, went to A and E twice in the the early hours over two days as the pain in my side and back was just awful and I and the medical team thought it might be kidney stones. So send him all our best wishes that at least the pain will subside soon. Poor chap. He was lucky to get such a good appointment with a locum at our surgery. Send him virtual hugs from all of us when he begins hopefully to feel a little better.
So very sorry for you both, terrible to cope with such pain. Thank goodness for a superb GP and medication. If only all these caring wishes for you and Griggser could effect a rapid magic cure. 🌺
Hello Jacky, I am deeply sorry for the excrutiating eye pain your poor dear Griggser is suffering with Occular Shingles, and I pray he will recover quickly now he is medicated.
I read your comment that Griggser 'has always been healthy (although in pain) with his PMR - this is a real shock ..... although he did have his first AZ COVID jab just over 2 weeks ago????' which brings in to question Griggser's Occular Shingles having been triggered by his AZ COVID Vaccination.
PMRpro and many Members on this wonderful life changing forum, have pointed to some vaccines, including Covid, being TSTBTCB, the straw that broke the camel's back, which in some immunosupressed cases triggers an infection or an autoimmune conditon, and have even provoked PMR for example, in perfectly healthy people. It is commonly understood that the added stress on our system of the vaccination pushes some of us over the cliff into an autoimmune disease or an infection like shingles.
The benefits of the vaccine are unquestionable. But some of the fallout, reactions, colatoral damage and side affects are truly devastating, as you clearly suspect this is the case with your poor Grigser's Occular Shingles????
I have just had my 2nd Pfizer vaccination for which I am truly grateful. I wonder if you will report Griggser's Occular Shingles to the Yellow Card scheme as they depend on all our feedback, however tenuous.
I truly wish you and Griggser well, very best wishes for a speedy recover, kind regards, Polly
Thank you for your comments. I will fill in the yellow card - it may be totally unrelated but I think they need all the possible information available.
You are a wonderful strong speacial lady and Griggser is blessed to have you on his team, and so are we all, thankyou for sharing, God bless, keep safe and Spring is on her way to brighten all our lives, hugs, Polly.
Sending best wishes to Griggser for as speedy a recovery as possible. Make sure the doctor gives you a plan for this weekend, but let's hope the medication starts to have good effect asap.
Poor Griggster! I had ocular shingles last year. I noticed that my right eye was getting very blurred and my sight was affected. It took me about 2 weeks to get diagnosed properly as the A&E sent me home and then I visited my optician who got me an emergency eye clinic appointment. I saw the consultant who examined my eyes and diagnosed ocular shingles. I had anti-virals in tablet and eyedrops and also anti bacterial eyedrops too and moisturising drops. I have some permanent scarring on my cornea which had improved a bit as the consultant said it would. I hardly notice it now but I still have to use moisturising drops every day and have been told this is likely to go on for life.
I did get some bad pain but as I am on strong opioid painkillers for my osteoarthritis I only had to top it up with paracetamol. I can imagine it's painful without strong painkillers.
So nearly 9 months on, apart from the slight blurry patch which is hardly noticeable now, I have fully recovered.
I also had shingles about 4 years ago too. I guess the virus is opportunist and takes advantage of our lowered immunity on prednisolone. I was on 30mg first time I had shingles but on 12mg when I got the occular shingles.
Hope Griggster makes a good recovery with no eye damage. I hope you can get the pain under control too xxx
I am so pleased to hear about your experience - it gives me a bit of encouragement. He is in so much pain I can hardly bear it. I have just spoken to our GP and she has decided he should be admitted. Hopefully in there he can get some stronger painkiller until the other drugs begin to work. Thank you so much.
I had ocular shingles twice. 1 gram valacyclovir, 3x daily did the trick. It took about 2 days to stop the pain the first time because it wasn't diagnosed for a few days.There's a study showing that a large percentage of temporal biopsies for GCA have shown the shingles virus in those arteries. I brought a printout of an article about this to my infectious disease specialist. I now have a standing Rx for a maintenance dose, 400mg of valACYclovir and the 1G dose for any sign of a flare up. Shingles can attack internally. I believe our weakened immune systems are primed for any stressful event or illness to trigger a shingles attack. I had GCA symptoms 3 times since my PMR diagnosis. I took the 1g dose & the symptoms disappeared within a few hours. I hope he feels better soon!
I'm so sorry to hear this and hope Griggser gets some relief very soon. It is very hard feeling helpless when a loved one is in such pain.
My mother in law had shingles in her eye back in the 1970s - I expect treatments are different now. She was in hospital, I think for about 10 days. The pain relief they gave must have helped somewhat, because I remember she was subdued but reasonably cheerful and able to chat. However she would regularly get an excruciating electric shock burst of pain that caused her to cry out, and then was clearly in terrible pain and exhausted for a while. But she did have periods of respite between the pain, when she was able to chat, eat and drink.
Thinking of you both and hoping for better things very soon.
I meant that the pain relief given as an inpatient in hospital seemed to help at least intermittently, and I really hope Griggser can get some relief soon.
I am so sorry to hear this! I know this pain. Please, could you clarify if his ocular herpes breakout was before or after the AZ shot? I have been living with ocular herpes for a good 35 years now so I know it pretty well. But I have been putting off getting the Covid-19 vaccine just for this reason of possibly agitating this situation. Do know that the pain will get better and that this is a condition that does not go away but you can live with it pretty comfortably once it is under control. I also started with a red patch above my eye, which broke out into little sores and then affected my eye. Extremely painful. All I can temporarily suggest is staying out of bright light for a while, maybe some ice packs on the forehead and gently on the eye for temporary relief. It will get better.
He is currently in A&E because the drugs didn’t appear to be helping at all and he was in extreme pain. But I am glad to hear that you have managed to deal with it for so long.
I have no evidence to say that the AZ Covid vaccine was anything to do with it other than he only had the vaccine on 1st March - he had no apparent side effects and was fine and 14 days later he started to feel slightly off colour for several days before this major event developed. It could be pure coincidence but he is normally healthy even with his weakened immune system apart from his PMR pain. I am going to get him to report it on the yellow card system when he is recovered - who knows. I’m all for vaccines but I know there is current research going on about effects on those with compromised immune systems.
Thank you for your feedback on the AZ shot. Many people have never heard of ocular herpes and have no idea how excruciating the pain might be. Another thing I have found to help with the nerve pain, amazingly, is a high quality CBD cream to rub onto the painful area. This may not be for now but later, when the pain subsides and there is a burst now and then the CBD took some of the pain away instantly and it is no conflict with any regular medical treatment so worth a try. I'm going to keep Griggser in mind and send him healing vibes, and calming wishes for you too.
I was so sorry to hear about Griggser. My husband had shingles in his right eye and we were just about to get on Eurostar for our annual holiday in France. Instead we finished up at Eastbourne A & E where eventually they realised it was Shingles. We had to turn back and go home, but as we were in a camper van he couldn't drive. We were taken home by the RAC. We know the pain is terrible, and you have my utmost sympathy. It will take some weeks to recover. Keep using the eye drops and using cold flannels to cool his head helps a bit. We were not offered Morphine. Somehow we got thru. that summer two years ago. My husband got scabs down the right side of his face. He looked as if he'd been in a fight and come off worse. He made a few visits to the eye department back home in Lincoln to have check ups. It doesn't go away quickly. He mustn't sit in the sun, keep the curtains closed or your blinds down to keep bright light out. If in the garden sit in the shade.
I was really interested in your words about what your husband and you went through. Because I had never heard of shingles in the eyes it is somehow reassuring to hear about someone else’s experience and that you can recover. My husband seemed so dire this morning I didn’t know what to do. He has been admitted to hospital now and they have him on intravenous antibiotics as well as antivirals and hopefully his pain is more under control. Thank you for sharing this story - it has helped calm me a bit.
Jacky I am just catching up with your terrible story & like the others my heart goes out to you. I am sure all the Truro PMR group are sending silent hugs & good wishes to you both though you need strong painkillers really!! I look forward to some better news very soon.
Thank you Pollyanna16. He managed to speak to me this morning from Treliske. He says he is no better but I’m holding onto the fact that he was actually able to phone albeit very briefly. I dont think he could have done that yesterday. Fingers crossed for what today brings.
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