Anyone had Shingles on their face/head?
Posted , 79 users are following.
I was diagnosed as having Shingles on Friday at the doctors. I started itching on my forehead Tues night and by the next day my forehead had all red marks on it? I didn't realise you can get shingles on your face?
I have had horrible pain on/off since, swelling on my eyebrow and jawline near my ears?
Anyone else had this? How long will it last? Also should I be off work with it?
Appeciate any advice please
8 likes, 309 replies
Kbelly1968 Schumacher13
Posted
I feel for anyone with Shingles. I'm 48 but was diagnosed when I was 21. I had no idea what was going on, especially since I never actually HAD chicken pox. For years I had a silver dollar sized area on the inside of my knee where I'd get a breakout. Last year, however, I went to the doctor with severe pain on my scalp with nerve pain going over the top of my head onto my face. I was told it was Shingles. Had absolutely no idea it could move that way.
I am into natural/homeopathic medicines and know now, finally today, that there are foods that someone with Herpes/Shingles to avoid. Unfortunatley, I'm on a healthy Paleo diet that is high in nuts & seeds along with coconut milk... and they are high in Arginine. Arginine can actually trigger an outbreak. I've been eating healthier in the last 6 months and I've had more breakouts than ever before. I have to give up my heart healthy walnuts, blueberries, etc.
It's very scary to have have the pain on your scalp and face, knowing that you can end up with the blisters and mess of an outbreak. I am very sorry you have to deal with this.
There is a lot of information out there about eating the right things and getting help naturally. That is not to say I don't believe in the medications. I am concerned about my eye so I immediately started taking Valtrex and within half a day, the pain subsided but I know if I miss a dose, that pain comes right back. Good luck with this...it can be really awful.
rose99677 Kbelly1968
Posted
Merry19451 rose99677
Posted
Dear Rose,
I am so sorry for your suffering with Post Herpetic Neuralgia PHN.. Your Physician has not given you any pain medication?
This is outrageous! Can you make an appointment to see a neurologist? Do you live in the UK where the access to the neurologist might be difficult?
There are medications that address PHN.
Gabapentin and Pregabalin
(Anticonvulsants)
Cymbalta and Venlafaxine
(Antidepressants)
Elavil-Antidepressant
Being placed on one of the anticonvulsant type and perhaps an antidepressant would definitely decrease the amount of Neurogenic pain you have...
Regarding the diet: Google Herpes Zoster-Shingles and high Lysine low Arginine diet.
It will give you a list of foods and the amount of Amino Acid ratio of Lysine and Arginine. Lysine protects against Shingles. Arginine triggers Shingles. Some people take Lysine supplements. I don't as I just follow the diet.
Obviously, as you have discovered, pain is worsened by activity.
I truly urge you to seek the help of a Neurologist, to get analgesics for PHN. Your general care doctor is not doing his job in alleviating your pain.
I am a Nurse Practitioner in the States and have had Herpes Zoster-Shingles in my ear every three to five weeks for the past twenty-one years and twice in my right eye..
May I ask where you live and your age?
I am 65 years.
Best Wishes
Merry Juliana
maggi_87179 Schumacher13
Posted
Hi I've just been diagnosed with shingles on the back of my head ,I though it was an insect bite,I have just started taking Famciclovir 250mg it's very important to treat it as it will spread ,good luck
alward Schumacher13
Posted
I was diagnosed with shingles in my right eye (right facial dermatome involving the terminal nerve 5). This was two weeks ago after three days of what I thought was a migraine with the most intense stabbing pains culminating in a trip to the emergency room. It literally felt like someone was stabbing me in the eye with an ice pick. Intensity was right up there with childbirth! On antivirals and steroid drops and narcotics for the pain. All likely induced by stress. The silver lining is that I only has two lesions (which I thought were bug bites) on my face. Had several more in my scalp making my head very sensitive.
After a week I tried to stop the pain meds so I could get back to work. Pain came right back. Ophthalmologist says I'm still in the initial acute episode and still have lots of inflammation inside my eye and the pain won't stop until that's gone.
I'm only 45 and a single mom to a 5 year old and have a pretty demanding (and rewarding) job at a medical school in the states. Following all the docs orders as the idea of losing my sight is frightening. I'm already deaf in my left ear.
My boss has been amazing, encouraging me to work from home and take the time I need. I'm very blessed in that area. I'm just concerned that this could become a recurring issue with stress-related flares. I have no expectations that my life will become less stressed as I'm sandwiched between caring for my little one and aging parents...one of whom is with me and one who has become sickly in the last year whi is also caring for my step-mom wife with early Alzheimer's and lives 3 states away.
I haven't really found anyone who has had a case like mine...exclusively in the eye. Would love to hear about your experience and how you've managed recurrences...cuz I have a feeling this will be me! Also any tips on minimizing flares. And pain meds that work that still allow you to drive and work?
Thanks much.
Amy
Merry19451 alward
Posted
I am so sorry for your suffering. Your script is similar to mine....I had Herpes Zoster-Shingles in my right ear starting at age 44 years of age, Ramsay Hunt Syndrome, and have it every three to five weeks for the last 20 years. I am a single mother, who was attending grad school and working full time when this started. I also had Herpes Zoster-Shingles in my right eye twice. The sensation of pain is agonizingly spot on.
The first episode of Shingles, I was unfortunately not diagnosed as two ENT physicians thought I was narcotic seeking. The third ENT was an otoneurologist and diagnosed it. I did not receive the antivirals, nor any Opioids for the pain. My suggestion to prevent relapses is the following :
Take the Famvir until the end. REST REST REST. Use the Opioids liberally, as studies have shown that when pain control is inadequate, the risk of post herpetic neuralgia magnifies and the also the risk of recurrent Herpes increases. Use the ophthalmic drops as prescribed. You are being followed by an ophthalmologist, correct? That is a necessity. You should be on Lyrica or Neurontin, as they decrease the severity of the pain, along with the Opioids. You need to rest a lot. Almost everyone is exhausted with shingles. So REST. TAKE YOUR OPIOIDS.
I am an NP in the States. I hope I have helped you. Please let me know how I can help you.
Best Wishes
Merry Juliana
Merry19451
Posted
Merry Juliana
alward Merry19451
Posted
Wow thank you.
I wanted to ask about the exhaustion... I am so worn out. I'm sure part of it is opioid but the exhaustion is bigger than that. I assume it's related to the inflammation???
How long this initial phase lasted for you? I've been told a couple weeks to a few months. Clearly I'm not the couple week case.
Thanks so much for all the info and encouragement.
Merry19451 alward
Posted
Merry Juliana
kerri41688 alward
Posted
I came down with shingles of the scalp, face and left eye June 12, 2016. Got into Dr on the 15th and started the Acyclovir and Percocet. The acyclovir made me deathly ill, could not keep it down.
Got into Eye Dr on the 16th. He and my PCP switched me to Valtrex and he gave me eye drops, etc. Have been back to him three times now as left eye is still involved.
The pain has been unreal. I don't remember the first 10 days of this awful journey.
I think the fatigue has been the worst I've ever experienced. Still have quite a bit of the exhaustion, but I think it's a tad better.
Left eye started hurting again pretty bad yesterday, so back on Valtrex and the eye steroid for the next 10 days.
So I am at a month. And it's not completely gone.
Merry19451 kerri41688
Posted
Kerri,
Eye Zoster is excruciating and also as it is very complex takes longer to recover than the regular skin structure. Any Zoster-Shingles of the head tends to be worse, not to marginalize anyone's shingles experience. Many more shingles complications can arise with ophthalmic Zoster, and it does not surprise me that you still have pain after one month. Hopefully, you are receiving Percocet with the excruciating pain. It is also normal to have fatigue several months after onset of shingles. I am sorry you are going through this. I have had shingles in my right eye twice and get it in my right ear every three to five weeks for the last 20 years. I am a nurse practitioner in the States.
Please let me know how I can help you.
Best Wishes
Merry Juliana
alward kerri41688
Posted
Kerri- Our experience sounds very similar. I'm at 2.5 weeks and thought this would be over by now. I'm getting the idea, I'm not one of the simple cases either. Exhausted and really hard to work and function normally on all the meds. But tried to quit the meds and the pain came back. I really just want to get back to normal as I'm sure you do as well.
kerri41688 Merry19451
Posted
Thanks Merry,
I am going back to opthamologist this afternoon. I tried to get in yesterday, but could not get through on the phone. I guess there were some phone outages in our area.
When the eye is involved, is it just the nerve around the eye? Is it possible to get the blisters on the white of the eye or under the eyelid? It feels like there is something in there somewhere hurting and I can't tell what or where it is. I've been to have this eye checked out three times now, and they have told me they don't think the optic nerve is involved.
Pain above the eye in the forehead also.
I'll repost when I get back.
kerri41688 alward
Posted
alward, it seems like this goes on and on. I went into the office for an hour last Thursday, and it just about did me in. It seemed to set me back. (I am a real estate agent, so I basically work for myself and can't get fired.)
The fatigue is terrible. My brain wants to work, and I have all these things I want to do, but just getting a shower done wears me out. I need to listen to my body. I've never been good at that.
Merry19451 kerri41688
Posted
It is possible to have shingles on the sclera, the white part of your eye, the eyelid margin or rim of your eye, or anywhere on your face. I had shingles on the sclera. It can affect deeper layers, but that is why you see the ophthalmologist frequently to avoid those complications.
How are you doing?
Are you still fatigued?
All My Best!
Merry Juliana
kerri41688 Merry19451
Posted
Hi Merry,
Thank you for checking back. I am doing a bit better. Pain is somewhat less and I feel this is slowly getting better. I don't have that really deep eye pain that I had a few days ago.
Fatigue is still there, but I actually did three things yesterday. Big improvement!
What I am having now is a bit of depression and I think that is related to the anti-viral med and being sick for over a month.
Trying to stay positive.
Kerri
Merry19451 kerri41688
Posted
Kerri,
It is difficult having Herpes Zoster, but try to view recovery as a process. As the eye is the most fragile organ to be affected, it takes the longest time to heal and can't be rushed. As you don't have the deep searing pain, that is a bit of progress. I have learned to be patient with myself. I need to rest or sleep, I do it. The world hasn't fallen apart because, Gasp! Merry didn't clean the house for a week! It was harder when I was working, to be sure, but I did it. Your eye will heal, given tincture of time...
All my best
Keep me posted
Merry Juliana
Jane1618 Merry19451
Posted
I think all the people who are on here and get over shingles in a few months are lucky compared to the suffering I still have after almost a year, my eye never stops itching for one day, also my eyelid and forehead, and my eye is so sore and sensitive and it will be a year in March that I had shungles!!. My Dr told me that it is the worst place to get it, but |i never expected to have problems a year later, with nothing to help. i still have to attend the eye clinic every few months but all i get told is "give it time"!!
Merry19451 Jane1618
Posted
I quite agree that the eye/face is the worst place, and suffering for a year is too much. Have you asked about a nerve block? I would....As I know how eye pain and itching can drive me up the wall from recurrent Herpes Zoster-Shingles ophthalmicus and scleritis, I would definitely ask regarding this option.
I do not know your medical history, at all.
Sometimes, a neurologist might be able to treat the terrible itching. As the site is the Trigeminal Nerve, sometimes they use Tegretol. If you have contraindications, that would need to be determined by a physician.
I believe you live in the UK, correct? The Ophthalmologist might not think of these options, but your internist or general physician might. It is worth a discussion so you can regain a quality of life.
Merry Juliana
Jane1618 Merry19451
Posted
Thank you so much for your reply Merry! I am going to ask about my options when I go to the eye clinic in March, but before then I will ask my Dr about seeing a neurologist, anything is worth a try as it does ruin my quality of life as you, if anyone can inderstand! I have been told about the nerve block, injection I just wasn't too keen on the idea in case it makes my head feel numb, I will keep in touch
Jane1618 Merry19451
Posted
yolanda_17574 Merry19451
Posted
Hello,
My husband has the shingles almost 3 weeks now
He has it in the eye and up his head
He is in severe pain starts in his eye and shoots up to his head
He's being getting this pain like every 2 to 3 hours A part and lasting like two to three minutes he's been taking Acyclovir 800mg the Tramadol 50 mg is not working Gabapentin & Prednisone
Been to 2 different Doctors and a Optometrist The scabs has fallen and his eye has opened but now he's in severe pain
Does anybody have any suggestions what I can do for him.I called for an appointment going to the doctor tomorrow morning.
Merry19451 yolanda_17574
Posted
Hi Yolanda,
I am so sorry for your husband's suffering. The eye pain is excruciating. He should be seeing an opthalmologist if the Herpes Zoster-Shingles is in his eye as the opthalmologist usually prescribes eye drops to decrease the inflammation. Your husband should be evaluated every week by the Ophthalmologist, as well.
Regarding the pain, the physician should have prescribed an Opioid for the severe agonizing pain that he has. I would make an appointment with a neurologist as they are often more adept at dealing with the pain of Herpes Zoster-Shingles. My suggestion is to ask for a neurologist in a University setting, if that is possible.
May I ask where you live and how old your husband is?
The neurologist can add different medications to help alleviate the Neurogenic pain your husband is experiencing. The gabapentin your husband is taking is often not titrated up after the initial dose.
Herpes Zoster-Shingles affecting the eye and ear are the two worse sites as they are such complex sensory organs. I have had Herpes Zoster-Shingles every three to five weeks for the past twenty years in my right ear and twice in my right eye.
I am a Nurse Practitioner in the US.
Please let me know how I can help you
Best regards
Merry Juliana
judy_22381 yolanda_17574
Posted
Hi Yolanda, I have all those symptoms for 9 weeks. My eyesight never felt right so I went to the optometrist, he sent me to the eye specialist. I had a virus on my cornea, been on cortisone & antiviral for my eye. After 3 weeks my eyesight has cleared & hardly any pain. The itching on my scalp & around my eye is still severe but apparently it takes time, if ever for that to clear. I hope this helps. Kind regards Judy
Merry19451 yolanda_17574
Posted
Tramadol is like water to most people....
Merry Juliana
yolanda_17574 Merry19451
Posted
Hello,thanks for replying back my husband is 65 we live in Amarillo Texas
he's been seeing a ophthalmologist Dr said his cornea is OK told him to come back in three weeks that was last week I'm going to have to call him tomorrow but my husband is going to see his primary doctor tomorrow morning i'm going to ask for a referral for a neurologist.
thank you so much
Merry19451 yolanda_17574
Posted
Yolanda,
My parents retired to El Paso, so I know Amarillo. I am glad his cornea is ok...
I am 65 years, as well.
Having had severe Herpes Zoster-Shingles in my eye and ear, I know the importance of pain control. Please be assertive in asking ie begging for oxycodone for your husband. (If he can tolerate narcotics)
It is difficult when you are the patient to be the one asking for anything....
These are arguments for prescribing Oxycodone:
1.If the pain isn't well controlled by the end of the first month, the chance of Post Herpetic Neuralgia PHN increases substantially.
2.Physicians duty to alleviate pain and suffering...He has been suffering.. 3.Herpes Zoster-Shingles is one of the most painful conditions known to man.
I hope this helps your husband.
Let me know how it goes, please!
Merry Juliana
Jane1618 Merry19451
Posted
judy_22381
Posted
Hi Yolanda, my Dr said my eye was ok as well for weeks & the pain was normal for shingles.It wasn't until about the 6week mark when I went to the optometrist. Optomologist said that I was lucky I didn't leave it longer. Judy