Anyone had Shingles on their face/head?

Hello since my first break out of shingles I have had them again. The most important thing that I can tell you is to get to an Opthalmologist. The one thing that I know is that you do not want shingles in your eyes. You must get on anti-viral meds fast. Call your GP and tell him what is going on please. Good luck. Diane

Irene,

The pain of Herpes Zoster-Shingles is excruciating and one of the worst pain known to mankind. The first week of Shingles is often not even the most painful week. As you are in severe pain, please see your Physician or go to urgent care or A&E to get Opioids for the severe pain. It is normal to have severe pain. The physicians need to prescribe excellent Opioids for you.

Best wishes

Merry Juliana

Hi, i'm new to this forum and not sure how to get into the discussion chain correctly so i'm just replying to the last post. on thursday nov 9 the headaches started. the next 5 days the tingling, tenderness and bad pain started on my scalp and forehead-left side only. it got so bad i'd tell people that my hair hurt. then tuesday at work i was standing in my bosses' office when the hearing in my left ear went, i lost my balance and the vision in my left eye got silver dots and closed down. the pain was overwhelming on those places on the left side of my scalp and forehead and eye and eyelids. my boss took me to the ER but they were clueless and didn't help me. the night of the 14th was unbearable and i went to a different ER. they were getting ready to do a CT scan to rule out a stroke when i broke out in shingles right in front of the Nurse Practitioner. she told me i had shingles, prescribed acyclovir 500mg 2 times a day and 5mg percocet 3 times a day and sent me on my way. her attitude led me to think that it was no big deal...boy was i wrong! my face and scalp and eyelid were so broke out they told me not to come into work-i can work from home so that's ok. had constant headache and jabbing streaks of pain every place affected. went to the ophthalmologist and fortunately didn't have it in my eye. caught a cold that saturday and it turned into pneumonia and i spent Thanksgiving in the hospital. i firmly believe that the zoster virus compromised my immune system for that to happen. yet all the health care providers seemed to just shrug off my case of the shingles. my break out dried up so i went back to work in the office the monday following Thanksgiving and have been dealing with the aftermath....the constant "headache" around my eye, the feeling like my skin is pulled tight against my skull on my scalp and forehead and the constant battle of the need to itch those places vs the soreness of the skin that itches not to mention the jabbing's still going on. my GP out me on Gabapentin 300mg 3 times a day but it's not working. so i move on knowing this is going to take a while. then tuesday my eye started hurting and got all red and the eyelid started turning red again. i woke up this morning and couldn't open my eye, too sensitive to the air. got in to the Ophthalmologist again this morning. no shingles in the eye once again but i can feel the tingling on the left lips, my left eye again and my left jaw. i'm having a recurrence already!! and i'm not even over my first bout. my GP prescribed Acyclovir again but this time 800mg 5 times a day but wouldn't give me anything else for the pain-stay on the useless gabapentin. the eye doc just gave me steroid drops and told me to get eye drops and gels for the sensitivity. this is a night mare!

Barclay,

I am so sorry you are going through this.

First, you were on the incorrect dosage of Acyclovir the first time. It is 800mg 5x daily for 7-10 days.

When Herpes Zoster-Shingles involves the head, especially the eye or ear area, the pain can be even more excruciating.

Gabapentin 300 mg 3x daily is a low dose. It should be tapered up.

The Percocet 5 mg should be increased to 10 mg every 4 to 6 hours as Shingles is one of the most painful afflictions of mankind. Most likely, your Shingles is going to get worse, before it gets better regarding the pain. Tell the doctor it is his/her duty to alleviate pain and suffering, that the Opioid epidemic is not your fault, and you obviously have an identifiable agonizing disease that he/she is not medicating properly.

A threat to the medical board usually works wonders. (Think about changing Physicians, at that point. )

Are you in the UK?

Use cool compresses and or ice to decrease the pain. Heat makes the pain worse.

Also, in the States, avoiding the eye area, some individuals use either Bactine or Solarcaine with Aloe topically. Both contain Lidocaine to numb the nerve endings. Please Google the equivalent if you are not in the States.

I use Benzocaine ear drops my ear when I get recurrent Herpes Zoster-Shingles. It truly helps.

Barclay,

Please stop working and just rest and sleep. The increased activity, movement, and work will just extend the duration of the disease and pain, and intensifies the excruciating pain you have to unbearable agony.

You absolutely can not power through this wicked disease.

Regarding your immunity, it is your lessened immunity that caused the Herpes Zoster-Shingles, and subsequent pneumonia and recurrent Herpes Zoster-Shingles. You were not given an adequate dosage of Acyclovir. Herpes Zoster-Shingles is somewhat resistant to Acyclovir in many people. I prefer to prescribe

Famciclovir 500 mg 3 times daily for 10 days in your case.

Valcyclovir is based on Acyclovir, and is a huge tablet to swallow. When you have a viral infection, you are more susceptible to another viral or bacterial infection.

May I ask your age?

Also, are you immunocompromised with

Irritable Bowel Disease, Systemic Lupus Erythematous, ITP, Psoriasis, Sjogrens Syndrome, Rheumatoid Arthritis, Cancer, or been on corticosteroids, immune modulating drugs or biologics?

I am a Nurse Practitioner in the States and have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye.

Best Wishes

Merry Juliana

Hello Merry. Thank you so much for all the times that I have seen you reply and help people with Shingles. You are so right about people with autoimmune diseases as I have RA and I am on Xeljanz and shingles is a side effect of that medication for my arthritis. I have had it twice and it started with my right ear stopped up. They broke out behind my ear and down my neck and  on the side of my face and chest. A nightmare disease. 

Again thank you for all the help that you give and I am so sorry for all the suffering that you have endured horrible! Diane

Dear Diane,

How are you doing now?

The RA in itself, and the immune modulating drugs both

certainly contribute to lower immunity.

My identical twin has SLE, RA, and Sjogrens, and I have SLE, ITP, Sjogrens, and Psoriasis. My autoimmune diseases are milder right now than my twin's. She hasn't had any strokes, though...or Herpes Zoster-Shingles....Thank heavens!

Actually, now I am encouraging everyone to get their Vitamin D levels checked. Mine was extremely low at 16, and I have been taking the recommended dose of 2000 IU Vitamin D3 for 1 -1/2 years. Maybe it is a combination of the higher level @ 60 of D3 and Lysine or one or the other that has significantly reduced the intensity and frequency my Zoster episodes.

I hope the Xeljanz is working well for your RA. It is such a debilitating disease. My mother had it, as well. I know the Zoster on your face in your ear is excruciating. My first episode I saw 2 ENTs who thought I was narcotic seeking. I just wanted a diagnosis. The vesicle-blisters hadn't appeared in the ear canal, so they had no idea what was wrong. A Neurolotologist made the diagnosis 3-1/2 weeks after the severe pain started. The pain was far worse than any migraine.

Unfortunately, Physicians today are often not prescribing Opioids for the acute excruciating pain. I feel for all the individuals who have the severe pain and are given Ibuprofen and Gabapentin.

Please keep me posted on how you are doing. Your rheumatologist probably checked your Vitamin D level as they are usually much more thorough and comprehensive than other Physicians.

Best Wishes

Merry Juliana

Hello Merry Julia,

What an amazing woman you are and very giving. You don't have to share with us at the level that you do but it is very much appreciated. 

I am doing well right now as the Xeljanz works for me  on my RA. I went through almost every other medication for this arthritis with little to no help and lived in pain. No I don't think that my Rheumetologist has checked my vitamin D levels but I will get that done asap. That's for the tip. 

Other diseases seem to come with these autoimmune illnesses. Once I was diagnosed with RA then came Sjogrens. 

So sorry to hear about all the diseases that you and your sister have. How are you all doing? I hate this mess going on with the opioid addiction it's a few as always that cause a problem for all of us that really need meds short term for real illnesses. 

I have medicine on hand always for shingles and get certain symptoms that alert me that an attack is coming so I get on my med immediately. Awful pain. 

I will close. Thanks again for all you help. 

Diane

Merry, thank you for your reply. I apologize for not getting back sooner but I just don't have the giddy up to do much of anything after working all day then coming home, taking care of the dogs, getting something to eat and then I just crash.

I’d have to agree that the original dosage of the antiviral they gave me at the ER wasn’t correct and I wonder if they’d given me the correct dosage if I wouldn’t be going through this 2nd occurrence? Guess we’ll never know. This week I doubled my dosage of Neurontin as Tues/Wed there was a lessoning of the tingling/pain and I thought the increase of Neurontin had worked but nope, it came back. I’ve been going round with my GP about getting the appropriate pain meds but he just won’t do it. Says he’ll recommend a Pain Mngt Dr. but that’s it. Seems like quite the hassle as PM docs have random testing…if you don’t get to a test site within one hour of their randomly timed call then you’re out of the program and labelled a pill chaser and I just can’t get up from my desk arbitrarily and leave at their random say so.

I am a 58 y/o male in the US in Ohio and am not immo-compromised that I’m aware of. I’m sure these back to back cases were caused by stress (high stress period at work the last 4 months) and 2 surgeries this year. I’d like to thank you for your suggestion to try and find a good skin salve. The tingling/itchiness/pain (I call it ‘the creepies’ as it feels like an alien is try to claw it’s way out of my skin!) had got so intense I almost couldn’t take it-and it was 24/7. I scoured the internet at 3:00AM (it had woken me up) and found a product that was 4.8 star rated so I bought some with overnight delivery (of course!) and it has helped me tremendously! I don’t know if we’re allowed to mention products here but if I can I will recommend this as adamantly as I recommend that anyone of age get the shingles vaccine! I still have the constant headache and the sudden shootings of jabbing, stabbing pain but at least I have something to fight the ‘creepies’ as I call them. It’s 12/17 and I still am feeling the full force of my first case of shingles-skin burning and pain, headaches, jabbing pains to my forehead and eye but this 2nd case along my left jaw, left lips and left side of my nose seems to have not progressed like the 1st case. No outbreak-yet-but still feel the tingling under my skin in those 2nd areas. Perhaps being on the correct dose of antiviral is the reason it calmed down?  Whatever the reason I’m so grateful there hasn’t been an outbreak to leave those areas as painful as the 1st left me. 

So sorry to hear re: your shingles saga. It truly is the worst pain I ever had. Mine were also left side of face around hair line, eyes, lips, way down in ear, and on head. Got Bell’s palsey for c. 2 weeks. One thing I noticed with the nerve pain is that it seemed worse when I was dehydrated. After I started ensuring I stayed well watered 🙃, the nerve pain diminished to almost nothing immediately. The doctor paid no attention to my query re: a possible relation bet. hydration & nerve pain. And, certainly hydration would nor correlate w/later outbreaks. But, it might lessen or eliminate the continued pain.  Hope you’re soon rid of residual pain. Mine lasted about 1year. I could never get water in my ear again w/out pain. And, the nerves around my eye, scalp line, and mouth are numb/dead. So, you may have some lasting effects.

Take care of self...bolster your immune system, find ways to make stress manageable, and get good sleep. 💐🥂

Hi K Vincent,

I agree about staying hydrated. I do not know your age, but my Vitamin D level was 14-16, and since I started taking Vitamin D3 supplements , the frequency of episodes decreased markedly.

Also, Google High Lysine Low A Arginine diet and Herpes. If you follow that diet, you are less apt to get a recurrence.

Best Wishes

Merry Juliana