Sharing Personal Stories: Shingles
The following articles share personal experiences with shingles disease:
- My Experience With Shingles - Kevin's story
- Shingles affects daily life for a long time after initial infection - Jim's story
- Too young for a shingles vaccine - a young woman's story
My experience with shingles
By Kevin Tripp
One day my friend asked me to run an errand for her. I agreed to help her out and because it was such a nice day, I decided to ride my motorcycle. I had no idea what was coming my way.
My first experience with shingles
I first felt a blister on the right side of my head when I took my motorcycle helmet off. I wanted to scratch it, but knew better because blisters aren’t something you mess with. Later that night, the blister burst when I put my glasses on; it was the worst pain I’ve ever experienced. If that is the type of pain you feel when you get a migraine, I hope to never, ever get migraines. I put some antibiotic ointment on the open blister and called it a night. I had no idea this blister was the first sign of shingles.
The next day the sore on the side of my head was larger and the stinging, burning pain was so bad that it made me feel sick. A trail of redness around my right eye and a blister in my eyebrow also started to form. Eventually, a blister formed in the middle of my forehead.
That weekend I went to a pig roast and met a veterinarian who took one look at me and said, “You have shingles. If it gets worse, you should go to the doctor.” The veterinarian said he knew it was shingles because his father had them before.
A few days later, my eye was swollen shut. When I called my doctor for a sick appointment, he said he couldn’t get me in until October. I said, “Doc, I can’t wait that long. There’s something really wrong.” I still couldn’t get an appointment, so I had a friend take me to the VA hospital.
When I got to the hospital, people were staring and saying things as I walked past. I heard one man say, “What in the world is wrong with him?” I turned around and said, “I don’t know, but I should be finding out soon.” I couldn’t believe people could be so insensitive!
I saw the doctor and he confirmed that I had shingles. He took notes and pictures to document my shingles rash. I was tested to make sure shingles wasn’t in my eye and luckily, it wasn’t. I received prescription medicine and was on my way.
It took 10 days for my shingles rash to go away but the pain and numbness lingered and then I got shingles again…
My second experience with shingles
Nine months later, I developed a small blister on the right side of my head. This time, I knew it was shingles. I called my doctor immediately and was prescribed medicine. Even though I caught it quickly, my second bout with shingles was still very painful. The rash only lasted about six days but the pain and numbness remain to this day — a year later.
My life now
I have three very deep scars on my face and head where I had shingles blisters. The slightest touch still causes a lot of pain, so I do my best not to touch any of them. The scar on the side of my head is the most sensitive.
I’m happy my vision is decent because I can’t wear my glasses anymore – the frames touch my scar and cause a lot of pain. I have to put a cushion between my scars and my helmet when I ride my motorcycle; this is the only way I can ride without pain. When I sleep, I have to make sure my CPAP mask and pillows don’t touch my scar or it wakes me up.
I keep a picture of a shingles blister on my phone to remind me of what I went through. Hopefully, I never have to experience the blisters, stinging and sensitivity again.
Editor’s note:
Anyone who has had chickenpox can get shingles; the shingles vaccine is recommended for adults who are 60 years old and older.
Shingles affects daily life for a long time after initial infection
By Amy Jessop
On a weekend evening during May of 2005, my husband, Jim, started to complain that he felt there was something sharp in his left eye. When I looked, I could not see anything. A few hours later his eye turned really red and the pain worsened. In fact, when I tried to touch his forehead to look at his eye again, the pain was so severe that he couldn’t stand the touch, so we went to the emergency room. The doctors could not see anything in his eye either. They discharged him, but told us to watch for any signs of a viral infection or rash.
The next day, his pain was worse and his forehead was red, so we went to our doctor who asked whether my husband could draw an imaginary line down the middle of his head and one side hurt and the other was fine. When he answered yes, the doctor said that my husband had shingles. He was prescribed antibiotics and sent to an ophthalmologist.
His symptoms continued and included the development of a minor rash, severe inflammation and pressure in his eye and impaired vision. The eye doctor prescribed two types of drops in addition to the oral antibiotics that our doctor prescribed. Jim then had to see a corneal specialist because of the damage to his eye. Within a month of the onset of shingles, he had to use a bandage contact lens. This device stayed in his eye for about a year and a half.
Jim had to see the corneal specialist about twice a week for about a month and continued to have several visits a month through December of 2005. The doctor worked to adjust the drops and monitor the pressure and inflammation of my husband’s optic nerve and eye. Because the corneal specialist did not have many open appointments, Jim would be scheduled during small open periods and this often led to hours waiting; luckily, his job was flexible.
By December there was still swelling in his cornea and optic nerve and there was talk of sewing his eye shut so that it could heal. Instead, my husband chose to rest his eye for long periods throughout the day and see if that would work. By the spring of 2006, there was still a significant amount of pressure build up in his eye, so Jim had to have surgery to insert a shunt.
The shunt surgery occurred about a year after his diagnosis with shingles. During that year, Jim was on several different steroids and medications, spent many days going to doctors’ appointments, and endured several procedures. In addition, a cataract formed in the affected eye and because of the swelling that still lingers from the infection, he cannot have it repaired.
Jim’s doctors still tell him they are trying to save his eye. He still visits the eye doctor monthly, deals with the cataract, and has the shunt in his eye. He needed glasses to see before this happened, but now he worries because his one eye has essentially lost vision. Because he is a professor and needs to read a lot, this has affected his ability to do his job. His good eye tires from reading and he sometimes gets angry, frustrated and even depressed. Jim no longer drives at night and if we are going somewhere together, prefers not to drive at all. We have not had a real vacation since this happened because we need to work around all of the doctors’ appointments, and we do not go anywhere that may increase the chance of Jim getting something in his eye, such as the sand at the beach.
When my husband’s bout with shingles occurred, he was 53 years old and a vaccine was not available. I often wonder how our lives would be different today if Jim had had the vaccine.
Too young for a shingles vaccine
I am a 28-year-old graduate student who also works two part-time jobs. Last fall was a particularly stressful semester. I knew that I wasn’t getting the right rest or exercise and I wasn’t eating that well, but I was busy, so I just kept going! By the time I got home for the holiday break, I was exhausted.
Unfortunately, the holiday break did not prove to be much better. I ended up with a stomach virus, was severely dehydrated, and had to be hospitalized for a day. About a week later, I got a severe headache. The pain was concentrated behind my right eye. I tried the usual things that I do for a headache (ibuprofen, hot compresses), but to no avail. Ten days later, not only did I still have the headache, but it seemed to be getting worse. I thought that I had a sinus infection, so I went to a free health clinic and got antibiotics. By then, I also started to experience some irritation in my eye and some bumps along my hairline, but I did not think much of these other symptoms and definitely did not think all of these symptoms were related.
Despite the antibiotics, the headache was not improving. The pain was so severe, that I couldn’t sleep or work, and I could barely complete a thought. I was pretty much staying in bed. When I noticed a rash on the upper right side of my face and around my eye, I figured that I better go to student health. By this time, my right eye was swollen shut. The student health doctor diagnosed shingles and sent me directly to an emergency eye clinic.
The staff at the eye clinic confirmed the diagnosis of shingles and prescribed four medications: an antiviral medication, a narcotic for the pain, an ointment for the rash, and eye drops. Other than waking to eat and take medicines, I pretty much slept for the next two weeks.
When I went to an eye specialist for a follow-up appointment, he explained that I had developed a condition called uveitis, which is a swelling and irritation of the middle part of my eye. I was prescribed two different eye drops. One was a steroid and the other was a muscle relaxant. The muscle relaxant dilated my pupil and I had to wear an eye patch for three weeks. Because of the dilated pupil, I was very sensitive to light, had trouble seeing, and definitely was not able to do things like reading. It was very frustrating.
I also had to go to my primary care physician for treatment of the shingles rash on my head and face. I was prescribed a medication, which I am still taking, to relieve the burning, itching, tingling feelings from the rash. I was told that sometimes this pain lasts only a few months, but other times it becomes chronic pain and can last for years.
When I returned to the eye specialist, I received the good news that I would not have permanent eye damage. I was lucky to have been treated quickly.
Two months later, I am finally beginning to get back to normal. I understand from others that I am lucky to have only been dealing with this for a few months and I am grateful that I did not have lasting eye damage. I hope others do not have to experience what I have in the past few months.
Editor’s note:
The vaccine is currently recommended for adults 60 years or older.
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