In late summer 2009, I was enjoying a lovely Labor Day holiday with three generations of my family, frolicking, relaxing and bonding. As much fun as I was having, something was nagging at me. I felt an overall fatigue, had a daily headache over my right eye and soreness in my eyebrow that felt like the eruption of an ingrown hair. But none of these signs, separate or together, could have prepared me for the monster which was about to unleash. Herpes Zoster Ophthalmicus had descended on me and mine.
When I say “me and mine”, that’s exactly what I mean. This is not just a personal trauma. Shingles ophthalmicus, or any other type, moves in bag and baggage taking over your life like an unwanted relative. It was in fact a full-blown fiftieth birthday present, and one that couldn’t be returned. It has also become the unwanted gift that keeps on giving, popping up from time to time in the form of pain, malaise, light sensitivity and itching. All these issues intrude on your daily life and the lives of your family.
Shingles gets its name from the Latin cingulus meaning girdle since many individuals who contract shingles get them on their trunk. Other areas include the legs, arms, neck, face and, for me, the eye. My case was textbook as far as zoster cases go. When I explain this to people, 9 out of 10 will remark that they have never heard of shingles in the eye. In reality, there are over 250,000 cases of zoster ophthalmicus annually in the U.S. which account for 10-20% of all cases.
Shingles is a viral disease exhibiting a blistering skin rash which mainly erupts on one side of the body in a limited area. The virus, varicella zoster, is more commonly known to cause chickenpox. Once chickenpox has run its course, the virus lives on latently in nerve cell bodies with virtually no outward symptoms. At a future point, this “sleeping” virus can escape from the nerve cell body and cause a viral skin infection in the nerve’s area. According to the New England Journal of Medicine in an assessment done the week my shingles appeared, approximately 98% of the U.S. population, men and women equally, are infected with the varicella-zoster virus.
My vesicles, or blisters, began to appear in my eye, then around my eye, over my brow, then onto my forehead stopping right at about the Ash Wednesday mark. This tell-tale design denotes the trigeminal cranial nerve involvement which is responsible for facial sensation and also incorporates the ophthalmic nerve which controls sensory skills for the forehead and scalp, the conjunctiva and cornea, the upper lid and the eye-socket and its contents. When all I could think about was pulling out my eyebrows, this virus was gearing up for the big assault. My headaches were also a part of the ophthalmic onslaught, as was the recent hair loss I had been experiencing, according to my dermatologist.
Once the vesicles began to pop and crust over, I figured I could put some ointment on them and carry on with life. Then the pain arrived. No one could have prepared me for the extent of what followed. Post Herpetic Neuralgia happens to about 20% of the 1,000,000 zoster patients per year and I was one of them. There is an approximate six-week period with which I am not familiar. I went from a person who never took medications to never being without them. My face could model for the special effects department of a Steven Spielberg movie. I lost 10 pounds even though I started out at a weight just below 100. Sleeping became my new exercise program and my new best friends were pain pills and the cat, which stood guard over me like I was Tutankhamen. If I had scratched my forehead any harder, I would have reached bone. Even the ghost in our 85-year-old house checked on me. She probably thought she was finally going to get some company.
Then, at a routine progress check, my ophthalmologist gave me the name of a pain management specialist. This man took control of the situation as aggressively as my shingles had taken control of me. We went through pain medication restructuring and began nerve block treatments to stop the pain messages to my brain, allowing my ophthalmic nerve to recover and begin working again. For the first time since I began my antiviral medication, I began to see the light of day. Literally. A side effect of zoster ophthalmicus is light sensitivity. None of the vampire series have anything on me. I couldn’t go out after dawn either.
Although there are side affects from my medication, I am now vertical, have sight and am able to generally go about my life. Things that should not be ignored in the case of Zoster Ophthalmicus include unexplained hair loss, headaches, brow pain or a stinging or foreign body sensation in the eye itself. These episodes singularly or together can spell months or even years of pain if not acknowledged in a timely fashion. When shingles are suspected, beginning a course of antiviral medication immediately can mean a better managed patient. With ophthalmicus, it can mean the difference between keeping your vision, or losing it. Even after the worst has passed, daily stress and weakness from the zoster attack can leave one open to further episodes. A maintenance course of antiviral medication may be an option your doctor will suggest.
There is some prevention for this affliction, though limited in its scope. There is a vaccine, Zostavax, which incorporates a weakened chickenpox virus to stimulate the immune system to help fight the virus. The vaccine is only for people over the age of 60 as this demographic has shown to be the group which suffers most from the symptoms of the disease and has the longest recovery periods due to the blisters running deeper into the skin. Zostavax is not prescribed for current shingles sufferers as it only a preventative measure. It does not work on Post Herpetic Neuralgia and may not be appropriate for certain individuals with specific allergies.
In recent surveys and blogs, however, it is evident that a wider range of age groups are becoming personally familiar with this unnerving disease. There are a variety of further breakouts including race, age, even geographic locations which can go on for pages regarding statistics on which group in what location have higher or lower incidences of shingles.
My sabbatical was a five-month period. Before I could return to work, I needed to feel 100% and look 100%. You see, ironically, I am a medical device rep who calls on ophthalmologists. Any MD or OD would be able to take one look at me and see what I had been through, which was not optimal. I had a wonderful village of doctors who put me back together; an optometrist, an internist, an ophthalmologist, a pain management specialist and in the end, a dermatologist and a plastic surgeon. They diagnosed, treated, reviewed their results and got very creative with a 27-gauge needle to make my scarred forehead look more like it had been eaten by a Pekinese rather than a Saint Bernard.
I am actually a very fortunate individual. Shingles came to visit and hasn’t completely left; it stops in from time to time to send its regards, however, my friend Valtrex shows it the door. I have my sight, which was closer to being lost than I care to acknowledge. Being slapped flat did give me time for pause. I have a deeper regard for my friends and family who all stepped up in a large way. I don’t rush around and worry as much as I used to. I take time out, and literally stop and smell the roses in my yard. I finished a full-length mystery novel, the first in a series, while lying in bed. This was especially difficult at times due to various medications which impaired my vision. And because of the permanent nerve damage at the brain stem, colors seem a bit brighter, smells are stronger (for better or worse) and my thought processes have broadened, also for better or worse.
I wouldn’t recommend shingles; that’s not the gist of my blessings summary. But when life gives you shingles, you either put up a roof, or lie down and let them crush the life out of you. I would have to say, at this point, I have a beautiful crown over my head.