Anyone had Shingles on their face/head?

My Heart goes out to you. I'm not a doctor So I couldn't say but mine was feeling so bad I had to go to a pain management doctor. He really helped a lot.He told me you never know how long it will last, but you have to keep the pain under control

As a fellow Ramsay Hunt Syndrome sufferer, recurrent, and Nurse Practitioner in the States, I would venture to say the diagnosis is spot on. Certainly, the sooner one starts the antivirals, the shorter the duration of the disease process. Congratulations, you have entered the rare disease category. When you tell other physicians you have Ramsay Hunt, they will draw a blank deer in the headlight look. It takes a long time for the rash to appear on your outer ear. The infection is traveling just below your brain on the auditory and facial nerve to your inner ear behind your ear drum. It may make an appearance on your ear canal and mouth. It took three to four weeks of excruciating pain before the rash made an appearance on my outer ear. It ruined my hearing. Hopefully, your physician gave you strong analgesics to stop the pain. With your symptoms, I guarantee you, you have Ramsay Hunt Syndrome. I have been having recurrent Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years (Ramsay Hunt Syndrome) and Herpes Zoster-Shingles in my right eye twice.

Please let me know what I can do to help you.

Best wishes

Merry Juliana

I hope you get over this before Christmas. I felt a little better a couple days before I went back to the doctor so I asked him if I could change from Lyrica to Gabapentin because I gabapentin and my insurance doesn't pay for Lyrica. I also went off the Percocet for two days and it seemed better. Big mistake. Now 2 days later I am Miserable. I'm beside myself. I have a Feeling this is going to be a rough Christmas

Have things improved for you at all since you wrote this? You were diagnosed the same time as me, last March! I have now been told that I have a scar on my cornea , and although my vision so far is ok, my eye feels sore every day and still itchy, i think this might never improve! I do hope that you are feeling better,

I really sympathise!! It will be a year in March that I got shingles in my eye, on forehead and head and I can honestly say that not one day has gone by that I haven't had itching in  and around my eye, it starts as soon as I wake up and comes back at various times of the day, There seems to be nothing that works, be it drops, cream in the eye socket etc, I keep being told "give it time" at the eye clinic, but I know this could go on forever, months, years, who really knows?? I had PHN so maybe everyone isn't as unlucky to have the agony of a sore eye all year!! I really wish you luck, and by the way, my rash also got re-infected a few weeks into shingles, it went very red, worse than at the beginning. This is the worst thing I have ever had!!

You must live in Australia or NZ...I am so sorry you are going through this illness on top of MS.

Regarding the itching for the scalp, ask your physician if you can use hydrocortisone lotion on the scalp for itch relief. Hopefully, this will help you. As I have major issues with allergies to foods and medications, I understand severe itching. I know that usually OTC oral antihistamines do not work and might cause balance and other issues with your MS. Sometimes topical numbing or Lidocaine or Benzocaine medication might help, but that also should be prescribed by your physician.

I also have imbalance issues, and no, not mental, though some might argue with you there, as well...

Herpes Zoster-Shingles has been visiting my right ear every three to five weeks for the past twenty years and my right eye twice. Naturally, my balance is shot when it comes on. Also, I have had two strokes, thanks to atrial fibrillation, which left a lesion in my cerebellum. I am lucky I received the clot buster drug tPA twice. I can still walk and talk after PT. These are little blips on the radar in the adventure called life.

I am concerned that your physician did not send you to an ophthalmologist STAT when you had shingles in your eye. It is considered an Eye Emergency. I am a Nurse Practitioner in the US and I know the standards of care in the UK, AUS, NZ and US are identical. As someone who has had Shingles in her eye, and scleritis, as well, and also as a health care professional, I am highly concerned regarding your vision.

I hope I have helped you Judy. You are not alone.

Best wishes

Merry Juliana

Hi Merry, yep I live in sunny (HOT) QLD, Australia. I went back to specialist, eye is getting better. I had my hair cut off, the hairdresser said my scalp is very inflamed. So I'll try to get back to my GP this week. I also now have the flu. I put some antiseptic cream with lilocain, helped a bit but made my rash more visible. But hopefully I will get better soon. It can't get worse!. Thank you for your kind words.

Hi Jane. I have found that many people I have spoken to haven't had shingles as bad as us, most have had a rash for a week or two & that's all. They can't understand the pain etc that is 'bad' shingles. Must be the lucky few! Take care. Judy

Judy,

I know with illnesses, disease, really, when it rains, it pours. You learn how to become tough quickly, and resilient, and adaptable, in this world of ours. And keep a strong sense of humor going...You would appreciate our foggy chilly rainy day on the Atlantic Seaboard in Delaware in the US today...The heat bothers me as well due to a certain drug I take. The thermostat is kept at a balmy 65°F , and I would keep it lower, except I am not cruel.

Best Wishes to you

Merry Juliana

Hi Judy, I just wondered how your eye is now? I had an appointment at the eye clinic and have now been told there is a scar on my cornea, that is the first time it has been mentioned in  almost a year! I am a bit scared of the future knowing I have this, but the eye pressure is the same in both eyes and my eyesight is ok for now, I just worry that as I get older things might change. I still have discomfort every single day with my eye either itching or feeling sore on and off, I think I will just have to learn to live with it as it isn't going away due to damaged nerves!! It's good to have this furum as it makes me feel I am not alone in this, Good luck !

Hi Jane, my eye is great. I do have scarring on my cornea but the specialist said that she's not worried about that. I am still on cortisone eye drops & antiviral cream for my eye, the specialist is weaning me off them, so I will be finished them by the end of the month. I still have all the other symptoms, I started taking Lyrica, 2 days ago, so we'll see how that works. Fingers crossed. It makes me tired but I'm trying to fight it. I also was putting SOOV, which is a antiseptic/lilocain cream, on my forehead & around my eye but it has now inflamed the skin, so that's out. The Dr said he'll give me some lilocain patches, so I will try them. Might look weird with patches on my head but if it works I won't care. Anyway Jane take care hopefully we will have a miracle & it will all go away. Judy

Can you remind me how long ago you had shingles? i think it was about a year like me? My eye is still sore most days and feels a bit like a stinging feeling. Every day I am aware of the pain or discomfort, I mentiined it to my Dr today but she had no suggestiuons other than what I am doing now, eye drops anytime in the day and gel at night in the eye. Did your Dr advise you to take Lyrica? i still have some pregabalin and am wondering whether to take it, is it meant to help even after shingles is over? I used to take amitriptyline and that really helped me to sleep well!, I hope you are feeling better 

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Hi Jane, I've only had this for about 11 weeks, seems longer. I don't have anymore eye pain, thank God. I'm on my last week of the cortisone & another week of antiviral cream. So I feel lucky compared to you & the others suffering. I have MS so I was always on amitriptylin (50mg) @ night. I'm also taking stilnox, sleeping tabs, but they weren't working to stop me from scratching in my sleep. Dr gave me Gabbapantin couldn't handle it, making me feel like I was drunk. Now it's Lyrica starting 25 for 2 weeks & gradually over 6-8 weeks up to 100mg. I've been going well with it so far, even going for little walks with my wheelie walker. But today it looks like a day in bed. Not happy! I'm just hoping that one day I'll wake up & not have this forehead & scalp pain & itching. I do pray that you can get some relief soon. Take care. Judy

Has the scar on your cornea affected your vision at all? Mine hasn't so I hope that wont change!

Hi Jane, no effects, my vision is back to normal. The specialist said that she's not worried about the scarring. I'm 57 so that's good. It's probably because I saw the dr quickly.

Regards Judy

Hi started 50mg on Saturday night. A bit tired from it but trying to fight it. I have had 1 day in bed & today looks like another but that's ok cos tomorrow is bingo & shopping. Saturday is tombola. and I'm not missing out on them. Just saw my GP he's given me a script for 75mg Lyrica in week or two. So I can let you know how it's working. I'm just happy to be able to sleep & not scratching my skin odff

Can you remind me how long ago you were diagnosed with shuingles?

I got shingles on the 01 Dec 2016. Not long compared to you all long-termers. The Dr said that in a couple of weeks to take 75mg Lyrica @ night if it is helping with the itching & skin crawling. Regards Judy

It certainly feels longer. From what I understand is that this is a long-term problem & so far the Lyrica is going to be long-term, which I'll hate cos I just reduced all my MS drugs 6 months ago. I hate taking drugs that makes me tired. It's interrupting my retirement.