Anyone had Shingles on their face/head?

this has completely ruined Easter as a family as I have had to cancel all our get togethers!! Not that I feel up to much anyway though.xx

Pauline

I can only imagine how painful it must have been to have it in your ear, knowing how much pain I've been in with it on my forehead!!!

Thank you so much for your excellent advice!!

Pauline.

I was originally diagnosed with a spider bite believe it or not. But turns out it was shingles on my left forehead. My jawline and glands are swollen. My eye is swollen almost shut and was seen in an emergency eye hospital. The opthamologist said my eyes inside looked good. However, the area surrounding the outside of the eye is very swollen and itchy. I was given Valtrex for the lesions and bacitracin optical ointment. When I wake up my eye is almost completely shut. Do you think this is just a reaction to having the shingles on my forehead or something worse is about to happen with my eye?

Dottie Duffy

Dottie,

Without a time frame, I cannot tell you. I also need to know if you are immunocompromised in any way, and your age.

Usually, Herpes Zoster-Shingles vesicle-blisters erupt in waves or crops over a period of five days, but when someone is immunocompromised, the story changes.

In any case, you should have a follow up appointment with the Ophthalmologist just to ascertain that the Herpes Zoster-Shingles virus has not affected the eye.

Sometimes, individuals have an episode, then, two or three weeks later, have another episode.

Hopefully, you have received a strong analgesic is Opioid, as Herpes Zoster-Shingles is one of the most painful conditions known to man.

I'll look forward to hearing back from you. Sorry for the delay in responding, but I had a physician's appointment today.

Best wishes,

Merry Juliana

No problem with the delay, I am very grateful for the response. I am 59 years old, I am not immunocompromised (although my husband is). The headaches started last week followed by a lesion on my forehead followed by swollen glands and swollen eye. This past Friday, I was diagnosed with a spider bite and given Keflex but over the weekend I got worse and my doctor said shingles but did not like how my eye was swollen so he sent me to an opthamologist to make sure it did not get in my eyes. I did not get an analgesic I was just told to take Motrin or aspirin. I would not wish this on anyone and sorry to hear your issues about this nasty virus as well.

Dottie,

Please ask your physician for an Opioid, preferably Oxycodone. I know how excruciating the lancinating pain is. The first time I had the episode, it took four Physicians to diagnose me. Two ENTs thought I was narcotic seeking....It felt like I was giving birth through my ear canal while being tased by a cattle prod. I literally wanted to cut out my inner ear.

It is their duty to relieve suffering. People who don't achieve good pain control during the first month go on to having the dreaded complication of Post Herpetic Neuralgia. Herpes Zoster-Shingles is considered one of the worst pain known to man.

Motrin or Aspirin will not help you. Only the Opioids will help with the severe pain.

I would also get OTC LIDOCAINE or Benzocaine cream, highest percentage to apply topically on the lesions, as you attack the pain receptors in different modalities.

You need to rest and sleep as much as possible. Don't try to power through this. Exhaustion and fatigue and malaise are companions of the terrible pain.

We are here to support you...

All my best..

Merry Juliana

Hi Merry,

I was reading your post. I have shingles of the face and ears. Ivhad one close to my eye, and now cannot blink. I can close my eye voluntarily, but can't blink. Have you had this problem, or know what to do about it?

Maria

Please schedule an appointment with an Ophthalmologist today. STAT.. The reason I say this is that if you cannot blink, you dry out your eyes. I know you know this part. An ophthalmologist needs to evaluate your eyes immediately, to see if there is any damage to your eye, and prescribe appropriate eye drops and ointment. Usually, they patch the eye. Please go today and let me know how you do! .I will get more information later once I know you have seen the Ophthalmologist...This is urgent...I am very worried about you.

Best Wishes

Merry Juliana

My mouth is partially paralyzed and I cant taste anything.

Maria,

The best eye drops are" Retaine" and the best ointment is" Retaine PM" which I would Google to find it. I have terrible problems with dry eyes and these are far better than anything else, preservative free, and you can recap the plastic vial to reuse the drops.

I need to go to the doctors now, but will talk more later. When did the Herpes Zoster-Shingles start and how old you you? Do you have any other diseases or conditions? Are you immunocompromised with SLE ITP Psoriasis Sjogrens RA?

Best wishes

Merry Juliana

Merry Juliana

I noticed two little pustules on my chiin on Feb 11. These broke, and soon after, I had a raised, red lesion on my chin, and swollen glands on the side of the lesion (the right side). I should have gone to the ER at that point. Instead, I slept the night through and then went to a med express. I told the Dr. That I was afraid it could be strep or staph. He gave me Keflex. The nexr day, Feb 13, I had another lesion on my right cheek. I called my Internist. The receptionist told me that the 'next available' was in May. I asked if the could possible have any open infs or cancellations on Presidents Day. FEB 20. They created an appointment for me on that day. In the meantime, I FaceTime my sister and showed her the lesions. She said to go to the ER. Instead, knowing I had an appointment, I just drcided to call my Dr. Office again. On Wed, Feb 15, the Dr. saw me &prescribed Valcyclomere. I took 3 one gram pills per day. On feb 2o, i noticed the paralysis. I saw the Eye Dr. The very next day. They just said to keeo it wet. My internist then prescribed Gabapentin and a steroid pac to be taken . It has been 4 days, and no change.

Do you know whether this paralysis will subside?

It is difficult to say how long the paralysis will last. Hopefully, you are resting, not working at all, and have strong analgesics for the pain. How severe is the paralysis? I realize that any distortion to your face is upsetting. Did your physician give you any indication of a time frame?

You are still in the very acute phase of the Herpes Zoster-Shingles infection, so you will not see any improvement in the next few days. It is very hard to predict the outcome of the paralysis.

As you are receiving the antivirals and steroids, that should maximize the treatment for the paralysis.

Like Merry said it is very important to keep the eye moisturized and covered/closed at night.  I use LacriLube gel at night and preserative free drops during the day, but both blur my vision.  It sounds like you got the steriods right after paralysis, so it should speed your recovery.  There is a closed facebook group for Ramsay Hunt that is very helpful. Facial paralysis and the unknown timing on recovery has certainly been a test of patience!  I wish you well!

Mary

Hi Merry,

I have shingles on my lower face, inside my mouth, jaw and ear. I see that you had them in your ear as well. Before going to the doctor yesterday, I showered and got a little water in my ear, had a lot of problems trying to get it out which I never succeeded. Went to the doctor because I knew something was wrong, he walked into the room and immediately told me I had shingles. I took the antivirus is soon as we picked it up from the pharmacy. Of course this morning I'm worse my ear is giving me the worst pain. What did you put in your ear? I was thinking olive oil but not sure if that would help. I am in bed for the last seven weeks with a broken ankle. I'm sure the stress from this has caused these shingles. I just sent my husband out for some essential oil's that I found on the Internet that are supposed to help. I'm willing to pay anything, this is awful. Anything that you could advise I would surely be thankful for.

Many Thanks

Diane

I am sorry you are going through this disease.

I am traveling due to a funeral and my phone is acting up.

Ask your physician for Auroguard Otic drops. Warm the drops in a pan of hot water until tepid and instill in the ear. They numb and soothe the ear drum and canal.

Also, ask for oxycodone. Shingles in your ear is excruciating.

What you have is called Ramsay Hunt Syndrome.

The pain needs to be controlled or else you run the risk of Post Herpetic Neuralgia PHN.

Best Wishes

Merry Juliana

Hi Merry,

So very sorry for your loss, thank you so much for getting back to me so quickly. I do have oxycodone because I'm laying in bed with a broken ankle for the last seven weeks. I did take the oxycodone last night. I had to go to urgent care because my first doctors appointment is next Friday, May 5. I probably could call his office and ask if he would prescribe the stuff for my ear. Again thank you I really appreciate your getting back to me so quickly

I would definitely recommend calling the office. The Otic drops really help me in addition to the Oxycodone.

Good luck in healing! Please let me know how else I can help you.

Merry Juliana

I’m so sorry to hear about your on going fight with shingles. You’re absolutely right about it being the worst pain! I was diagnosed with shingles about 2 weeks ago (after going to my former pcp, urgent care, and 2 emergency rooms). I have it on my scalp and lower cheek (right side). It started out as a run down feeling and headache. Then I started getting a neck pain, thought it was a pinched nerve. The neck pain became excruciating. By the time I was finally diagnosed correctly, a week had gone by. They put me on acyclovir and gabapentin. Also hydrocodone. All of it helps. The blisters have scabbed over and are going away. The neck pain just feels very tender now. I have a constant low grade headache and itchy scalp. My biggest problem is this weird tingly ticklish feeling on my scalp and the itching. I can’t sleep! The tickling starts and it drives me nuts! I can’t have any hair movement or the tickling starts and I’m giggling and moaning (the giggling wears me down until it’s a painful “please stop tickling me it hurts” kind of pain). Then there’s the constant itchy feeling on my scalp. I want to shave my hair off and take a pumice stone to my head! I do my best not to scratch. It helps that my scalp feels bruised and any pressure (like fingers trying to itch) results in immediate intense pain. Anything you can suggest for this? Is this normal? I should mention that I’m 43, went through colon cancer for about a year and a half (which caused a perforated bowel, giving me a colostomy which eventually was reversed, an ileostomy which eventually was reversed, a full hysterectomy, and surgery to remove the tumor) and am in remission as of 11 months ago. Went back to work 3 months ago (and it’s stressful). Was diagnosed with two hernias about a week before the shingles started. The hernias were due to all the surgeries in the abdomen area. Cold seems to trigger the tickling too so it’s lucky I live in Arizona.

Hi Michelle,

Are you still on the Gabapentin? That still should be helping with the itching. Itching is Post Herpetic Neuralgia PHN, btw.

One topical agent that seems to help the itching is Lidocaine. I don't know if your hair is short or long, but you might try Solarcaine with Aloe or Bactine. See which formulation might work better in your hair. Bactine should not make your hair greasy.

I would normally recommend cool compresses or ice, but that worsens your itching. Have you tried warm, not hot compresses?

Do you wear a cap, chemo hat, scarf to keep the hairs from moving? I know the intense pain from ordinary stimuli should be avoided. I know a subtle breeze would throw me in waves of agony . I would use Benzocaine otic drops and stuff my ear with a cotton ball. It helped markedly.

I'm still on Topiramate, as I am a Migraineur, and have mild episodes not rendering me bedridden. The Topiramate is an anticonvulsant similar to the Gabapentin and tones down the nerve pain/itching stimuli.

I hope this helps you. In my ear I prefer warmth. On my eye, I prefer cool compresses. I had Zoster twice in my right eye and scleritis many times in both eyes. Each of us is different for different sites and different pains.

Most individuals find the antihistamines and Corticosteroid medications do not help the itching of shingles.

Best wishes for the New Year

Merry Juliana

I'm still on gabapentin. The MD says for another week and a half of taking it 3 times a day and then I'll be doing a week of taking it 2 times a day and then a week of taking it 1 time a day. I don't have a hair cap or anything. The hair on the top of my head comes down to my chin and the hair at the base of my head comes down to about an inch longer than shoulder length. I've tried lotion (I was desperate) and now I'm using Calamine lotion which seems to help a little. I did try warm compresses and sometimes it helps and then others it starts the itching. I will head to the pharmacy tomorrow and get the Solarcaine with aloe and the bactine and see if either of those work. Since I'm showing signs of PHN, does that mean this is not going to go away anytime soon? I don't know how you've dealt with this for so long but thank you so much for posting on here. It's been a real comfort to know that I'm not alone in this. I changed my PCP over this. It was the last straw. He missed my cancer diagnosis for 2 years and then he missed the shingles diagnosis completely and I had the pins and needles symptom, the pus oozing all over the right side of my scalp and there was a grouping of boils on my right cheek, and the intense neck pain. When I went to see him, he made it sound like I was overreacting. Like I said, last straw.

i see no postings from you for several years and am wondering if this chat group is still active or should I continue searching.

Bigwiscon,

i'm going through my 2nd back-to-back outbreaks on my head and face. been dealing with this since nov 9th and other than the rash clearing up have received no real help from the medical community at all. they treat the pain and negative nerve stimulation you get from the shingles as if it's nothing! the only quality help i've received was from my ophthalmologist who happened to have gone through this himself so he knows. unfortunately he cannot prescribe any more pain killers for me so-after 2 months of unrelenting pain and burning and tingling in my left eye, eyelid, forehead and left scalp i have to schedule to get into pain management. my PCP put me on 2 weeks of neurontin-no help. then 2 weeks of Lyrica-worse than useless as i had a negative emotional episode while taking it and it did nothing for the pain. my PCP's recommendation? take less Lyrica. take less of a useless drug that left me semi-psychotic? after 28 years of being with this PCP this mis-treatment of obvious back to back cases of the shingles has led me to search for another PCP. in the meantime i'm waiting in agony to get into see the Pain Management doctor. 9 more days and counting down. i started Tegretol a couple of days ago and am waiting to see how that works.

a couple of things from your post....if you've been to an ophthalmologist and do not have the virus in your eye i'd doubt if your eyeball is swollen. your eyelid may be but not your eyeball itself-see my pic attached. medical reports and info says that if your brain is involved it would be apparent the first few days of the occurrence and is very rare. the only form of paralysis i've heard of is facial palsy that may occur-i'm suffering from a little bit of it on my left eyelid but not enough to worry much about it. hoping it clears up as i move through this.

my eye doctor put it to me this way..."we're so used to viruses being taken care of in 10 days to 2 weeks. we take our pills and they go away. not so with shingles. shingles attack certain nerves and it typically goes on for 2-3 months. in some cases the patient gets PHN and that could last a lifetime."

as i'm starting my 3rd month of symptoms of PHN i'm going to see the pain management specialist. i can live with the feeling on my scalp and forehead and cheek of having a severe sunburn but it's the painful, creepy crawly feelings under my skin, my eyelid and my nose (and up in my nostril of all places) that drive me crazy! my only saving grace is that i have discovered that cold puts the creepy feelings as ease for about an hour at a time-it's the ONLY way i've been able to get any sleep whatsoever the last few months. i use a gel hot/cold pack that's flexible even when frozen and put it in a towel and rub it over the affected areas. of course it's in constant motion so i do not freeze my skin. use the same common sense approach you'd use while applying a cold pack to a joint or muscle injury....do not leave it on too long!

as my rash is gone i've tried every 'shingles pain' cream that i can find. none are effective for more than an hour but there are some that do work for a bit. i just today tried a plain lidocaine based cream with the same results...lasts only a bit and the label says not to use more than 3 times in a 24 hour period so i'm saving it for trying to get more than 1 hour of sleep at a time.

basically what i'm saying is that the ravages of shingles stays with you for a long time and unfortunately there's not really much the medical community has to help us out with them.