Shingles on Forehead and in the Eye
(Ocular Shingles)
In January 2015, I knew nothing about Shingles or Herpes Zoster Virus.
Now, having come close to losing my sight as a result of "ocular shingles" or "ophthalmic shingles", which is when an episode of shingles attacks the eye, I want to share my experience so that other people might come across this when searching for information about their symptoms and find out the most important things to know and to do, and when to take action.
DAY ONE
Shingles - the Early Warning Signs
HEADACHE
Looking back on it, the first sign was a headache, but as headaches can be caused by so many insignificant things, who would worry about, that, right? I ignored it, of course.
SKIN SENSATIONS ON FOREHEAD OR SCALP: TINGLING, STINGING, SKIN CRAWLING OR ITCHING
The night after the headache, I woke up from my sleep with the distinct feeling that someone was pulling my hair, HARD!
I thought I was dreaming or imagining it and went back to sleep. It woke me again, two or three times.
It felt as if someone was touching my hair. It was waking me up and, since my husband was away on a business trip and I was alone in the house, it made me anxious, but I put it down to an over-active imagination. There was a crawling sensation on my head as if my hair was being blown by a breeze or moving about.
It didn't make sense.
Weird? Yes, but having no idea what it was, I tried to ignore it and get back to sleep.
PAIN LIKE SUNBURN, PAIN WHEN COMBING HAIR
The next morning, I thought my experiences the previous night were peculiar and tried to put them out of my mind, but when I began to comb my hair, it was painful. Any young girl who ever had her hair tied in a tight ponytail and then removes the elastic band, knows that it can be painful as the hair moves free. That's how it felt. Every follicle was sore and sending out a message of pain. When I touched my scalp, it felt as if the skin was suffering the effects of sunburn.
RASH, SKIN HYPERSENSITIVE TO TOUCH, STINGING, PAINFUL
Later that day (the day after the headache) I noticed a very faint rash on my head. It was hardly visible, but the skin was very sensitive and painful when I touched it. It felt as if my fingers were burning my skin, when I touched my forehead I felt pains like needles stabbing in.
When I look back at the picture above, I can already see from the bloodshot signs that it was affecting my eye, but at that point I didn't feel anything in my eye. It doesn't look much worse than if I had rubbed my eye, or had got soap or shampoo in it. Nothing I was feeling seemed dangerous but it was puzzling enough to make me search for an answer to my symptoms on the internet.
All I found about the skin sensations were references to Motor Neuron Disease and all that did was convince me I was worrying unnecessarily. So what did I do? I decided I was being a hypochondriac. I ignored it.
What I didn't realise was that an important countdown had begun....
This is Day One of the Rash, and a 72-hour countdown for treatment has already begun
I know now, that at this stage I should have gone to the doctor to start taking anti-viral medication to try to arrest the progress of the virus.
If your symptoms are similar at this stage, go to the doctor immediately - even if you see very little on your skin.
I simply tried to ignore the symptoms.
I am someone who is used to having allergic reactions to soap, water, creams, I thought that somehow my forehead had come into contact with something that was causing a reaction and that I was just having an attack of dermatitis or eczema.
DAY TWO
It put my mind at rest that I seemed to know what the problem was. BUT... I spent Day Two finding out more about Shingles instead of going to the doctor.
Day Two
The next day, I found some information about Shingles on the internet and for the first time, I considered that I might have Shingles.
I was now experiencing...
Sharp, stinging, excruciating pain
My skin was incredibly sensitive. My scalp hurt if my hair moved. My forehead hurt if my hair touched it. It felt like knives, or needles stabbing into me. The pain felt like a carpet that had needles instead of fibres and which someone was pressing hard into my face and scalp.
More inflammation and blisters
The rash was raised and I could see that small blisters were forming. My eye was more bloodshot and painful when I looked up and down or side to side. But the eye didn't bother me as much as the pain in my forehead and scalp.
What is/are Shingles?
Anyone who has had Chicken Pox can get Shingles later in life.
The Herpes Zoster Virus doesn't leave the body, it resides latent in the spinal ganglia. At any time it can break out of nerve cell bodies and travel down the nerve axons to the skin, erupting in the region associated with that nerve. It's possible that this could happen as a result of stress, or low immune system. But this happened to me when I was feeling particularly well and healthy!
You cannot give anyone Shingles, but if someone comes into contact with the rash, who has not had Chicken Pox, then they could catch Chicken Pox.
Distinctive Characteristics of Herpes Zoster Virus Rash and Blisters
Being associated with one nerve, the rash is contained within the part of the body associated with the nerve.
Think of the nerve like the trunk of a tree, with branches spreading out. The virus travels along the branches to the skin, but it stays in one connected area. You will find the rash is contained to one side of the body. I had a classic case of rash on one side of my forehead - this was coming from a nerve at the top of my neck.
The most common place for a rash is on one side of the body or trunk.
I spent Day Two reading about things like -
Vitamin C can be helpful
Lysine - found in fish and avocado - can be helpful
Tea Tree oil can be soothing for the rash and protect from infection.
I squeezed fresh oranges and drank lots of juice. I ate Tuna and avocado. And I dabbed Tea Tree oil on my head, What I didn't do, was go to the doctor because I thought the virus would just run its course and go away.
By the end of Day Two, 48 hours had passed since the appearance of the rash.
DAY THREE
Day Three
On Day Three, my eye was completely bloodshot and I found a page on the internet that said, if Shingles goes near your eye, it's serious! Very serious.
I got to the doctor just within the crucial 72 hours deadline for anti-viral treatment to be effective.
I was given anti-viral tablets and anti-viral ointment for my eye.
But here's the thing.... the anti virals (which have to be given within 72 hours to work at all ) only arrest the progress of the virus. They cannot reverse what has taken a grip already. At that point, the doctor should have sent me to an ophthalmic specialist, because the virus had already got into my eye, but at least he got me on the anti-virals.
DAY FOUR
Day Four
On Day Four, my eye was very swollen and it was difficult to get the anti-viral ointment in.
I was taking the high doses of anti-viral tablets round the clock, and hoping that they were going to start working.
The stabbing burning pain in my face, head and scalp was awful.
DAY FIVE
Day Five
The blisters were even more pronounced.
The pain continued.
And now my sight was severely affected.
It was completely blurry, I assumed this was the ointment, and that I just had to keep taking the medication.
DAY SIX
Day Six
The blisters were now forming scabs, I was putting Tea Tree oil on them, and I think this helped to prevent infection and scarring on my forehead.
But my sight was now reduced to being able to make out blurry coloured shapes.
My husband who had been away, came home from his trip late that night and was horrified. He resolved to take me back to the doctor the following day.
DAY SEVEN
Day Seven
We went to the doctor, and saw a different doctor this time who was shocked that I had not been referred to an ophthalmic specialist sooner.
She made an appointment and we got to see him later that day.
He was very disturbed by what he saw and warned that it might not be a positive outcome.
There was a possibility my eye would be irreparably damaged and even that I could lose my sight completely.
The virus was attacking my eye and every part of it was inflamed.
The pressure in my eye was at very dangerous levels.
I had conjunctivitis, uveitis, inflammation of the retina and corneal lesions.
He couldn't tell how well or not I would respond to treatment, or how badly the optic nerve might be affected.
During the following three weeks...
For three weeks, I was taking eye drops around the clock. and getting regular check-ups with the ophthalmic surgeon.
For most of that time I was unable to see anything except light and dark shades with the affected eye.
Slowly I was weaned off the drugs as the doctor saw improvements in the inflammation.
My sight began to return, blurry at first, but improving all the time.
Be prepared for the depression that accompanies treatment.
The side effects of some of the drugs were "suicidal thoughts"! So some of the depression could be induced by the treatment. But the illness itself will make you feel very, very low. Understand that it's perfectly normal.
DAY THIRTY
Day Thirty
My eye was still inflamed, and my sight was very slightly blurred, but I was very, very lucky indeed.
A month after the attack began and the pain in my forehead and scalp began slowly fading, but in the late afternoon, or evening, if I was tired, it would return with short, excruciating, attacks.
The red marks of the rash faded but they, too, would flare up from time to time. I found a tip on the internet about bathing the rash in saline solution (which I made up with boiled water and sea salt). As it dries on the skin, it has a soothing, cooling effect and definitely calms the pain.
Five months after the start of the attack...
Another visit to the eye doc confirmed that all was not well with my eye. I would have ignored the bloodshot-ness and blurriness because I would have been happy never to see another doctor's surgery again, but I was putting myself in danger of never seeing *anything* again.
The shingles virus was continuing to try to attack. My immune system was fighting to keep a lid on it, but the virus was still managing to cause inflammation at the nerve endings. It was creating adhesions between the iris and the crystalline lens and affecting the ability to focus. If the muscle cannot work properly, it will atrophy.
I had to have another month's worth of anti viral and steroid treatment. It's important to come off the steroids very very slowly so that there is no "rebound".
After one month of additional treatment...
I was finally declared “clear”.
The ophthalmologist was VERY pleased with his handiwork. So pleased, in fact, that while he was examining it, he stopped and said, "it WAS your right eye, wasn't it?" Because he couldn't believe he was looking at the same eye that had had all the problems - he said it was "almost perfect".
There's just a tiny bit of adhesion left where the iris is attached to the crystalline lens, but it's not affecting my sight, it just means the pupil is a bit more dilated than the other eye, so there's some light sensitivity - but sunglasses fix that, so that's no problem.
TWO YEARS AFTER...
The good news is that my sight has almost returned to normal.
I was left with a bloodshot streak in my eye for about eighteen months, but it has now almost completely faded away.
The pupil in the affected eye is permanently larger than my other eye, and this causes a bit of photosensitivity. I have to wear sunglasses whenever it's bright outside.
I count myself lucky and am grateful for the course of treatment my doctor prescribed. He undoubtedly saved my sight and my eye.
If you have these symptoms
don't postpone going to the doctor as I did!
It doesn't end there!
Unfortunately shingles doesn't just attack you and then go. I have come to live with a number of things with varying degrees of discomfort or annoyance...
Shingles can return
Fortunately it didn't return to my eye, but about 18 months after the original attack when we were in the midst of moving house, I got a painful rash on my shoulder. At first, because I had been clearing out a very dusty attic, I though it was spider or some other insect bites. Stupidly I didn't recognise the stinging, stabbing pain until it was too late. It was shingles and I get occasional attacks of Post Herpetic Neuralgia on my shoulder as well as head, now!
Post Herpetic Neuralgia
The discomfort of stinging and stabbing pains can appear at any time. They don't necessarily last for very long, and they have definitely become less frequent, but they show no signs of disappearing completely.
Headaches
I get headaches - like migraines - which don't respond to any sort of painkillers and last between 18 and 24 hours. They definitely seem to centre on the same area where the shingles was.
Fatigue
The headaches are always preceded by an enormous feeling of fatigue. I now recognise the symptoms and know what to expect which makes it easier to get through it. Sometimes I just have to go to bed very early or close my eyes and have a nap in the afternoon.
This attack came out of the blue and anyone who has had Chicken Pox is at risk of it happening to them.
I hope the descriptions of the symptoms might be helpful to anyone who might have Shingles on the forehead and eye.
My advice is to get to the doctor as quickly as possible, so that the any treatment given can attempt to halt the progress before it goes too far.
I know that a Shingles vaccine exists which might be an option worth considering for some people. I haven't taken it, as it doesn't offer a guarantee of keeping you shingles-free.
Click here to find out more about Shingles
Click here to find out more about Ocular Shingles
More about Herpes Zoster Ophthalmicus
Please note, I am not a doctor and am not giving medical advice.
I am describing my symptoms and experience in the hope that it will help people to seek proper medical advice and attention without delay.
Janice Hally
http://www.janicehally.com
