Parents PACK Personal Stories – Shingles

Shingles started on a day like any other…

By: Nancy Greeley

One morning as I got ready for work, I noticed a slight itchiness on my back, and when I twisted myself in the mirror to try to see what was going on back there, I saw a few red blotches on the top right side of my back. I started to self-diagnose whether it was poison ivy, bug bites or something else. I am usually healthy, so I didn’t think it would require a doctor’s visit. But later that day I talked with my sister, who is a doctor, and she said it sounded like it might be shingles. I had seen my father go through a terrible bout with shingles decades ago, so I started researching shingles immediately. One of the first things I saw (other than the horrifying pictures of shingles cases) was that if you go to the doctor, get the prescription, and start shingles medication within 72 hours of the first symptoms, then the intensity of your shingles may be reduced.

Intense pain despite early diagnosis

I waited 24 hours to see if it was going to get any better — it did not. Instead, the pain started around the rash area, spread in a band to the front of my body, and intensified daily. Thanks to my sister, I had a doctor’s appointment within 54 hours of first seeing the blotches, was officially diagnosed, got a prescription, and started taking the medication within 57 hours.

In whining emails to girlfriends, I assumed my symptoms would be getting better in a week — they were not. Even with early diagnosis and medication, the pain was bad. I went through about five weeks of intense pain, and it finally was gone after seven weeks. It hurt inside me wherever something touched me. Moving hurt. Sitting in a chair hurt. Going to bed hurt. Wearing a bra was not an option. The pain caused severe exhaustion. My email to my girlfriends tells what I was feeling:

“I cannot tell you all how horrible it is to have shingles. It hurts with aching, burning, and shooting pains at different times. It is spreading and there’s nothing you can do to stop it. Hard to sleep, hard to think clearly, low energy … I think the meds will keep it from being as bad as it could be, but it is still very bad.”

One difficult aspect of getting shingles was that I had to tell my sister-the-doctor who specializes in vaccinations that I had not gotten the shingles vaccination. You can imagine how that went over and how foolish I felt realizing that I could have avoided this whole episode. Especially since my (and many other) insurers cover the cost of the vaccination. My only reason for not getting it? I just didn’t get around to it (although I get sick leave at work that would have covered the time it took to get it). I promised my sister that as my penance I would share my story with anyone who had not gotten the vaccination to tell them how bad getting shingles can be and encourage them to get the dang vaccine! I’ve told my friends and co-workers, and now I’m sharing with you. As I read other people’s stories, I realize that I didn’t even have a worst-case scenario.

Facts about the shingles vaccine

Here’s what the Centers for Disease Control and Prevention (CDC) says about Shingrix^®, the shingles vaccine, “Two doses of Shingrix provide strong protection against shingles and postherpetic neuralgia (PHN).” PHN is “long-term nerve pain” that is the most common complication of shingles — I’m still waiting to see if I will be affected. According to the CDC, if you get the shingles vaccine:

The vaccine will prevent 97 of 100 adults 50 to 69 years old from getting shingles, likewise for 91 of 100 adults 70 years and older. Immunity remained high throughout the seven years following vaccination.
The vaccine prevented PHN in 91 of 100 adults 50 years and older and in 89 of 100 adults 70 years and older.
The vaccine prevented shingles in 68 to 91 of 100 adults with weakened immune systems, depending on their underlying immunocompromising condition.

I hope that my experience encourages you to avoid the risk of shingles by getting the vaccination instead.

See Nancy’s story featured in a Washington Post article by Elizabeth Cohen.

It feels like I’m going to lose something – Paula’s story

By: Paula Bourdon

Every time I have a shingles attack, it feels like I’m going to lose something — my eyesight, brain activity, my nerves — it’s so scary. My husband just has to hold me as tight as he can until it’s over.

A lightning bolt hit my head

My experience with shingles began with a small, red, painful spot on the top of my head, as if I had bumped it on something. Three days later, it started showing on my forehead and the pain and burning on my head and eyes worsened. By the next day, my family doctor and eye doctor agreed it was shingles and decided to start me on Acyclovir^®. Right after that first attack, it felt like a lightning bolt hit my head. I was jumping around screaming for my husband. The shingles rash was stretched from my eye to my brain.

The doctors told me this initial onset of shingles would get worse before it got better. Two days later I got very sick with a temperature of 102° Fahrenheit and was admitted to the hospital with another infection in addition to the shingles on my head. I spent almost a week in the hospital. Since then I follow up regularly with both my family doctor and my eye doctor. Luckily, I didn’t lose my eye sight.

Since my first attack

I’ve had at least eight shingles episodes since my initial diagnosis. For a time, when I was getting regular attacks, I stopped driving and it became very difficult to even leave the house. I haven’t had an attack for some time, but shingles is still something I live with every single day. My life has been forever changed as a result of the daily blurred vision; burning, itching and pain on my head, face and eyes; numbness; and debilitating headaches with overwhelming sweating.

But the biggest change to my life has been that I have no energy and am unable to do much of anything anymore. I do a little bit and then I have to lie down for several hours. My husband has to do most things for me. He does all of the cooking and most of the cleaning. I can do maybe one room, but otherwise he takes care of me.

Plus, you never know when an attack is going to come and you live in constant fear of one. The pain is the worst thing you could ever imagine.

Getting vaccinated

I take five to six medications a day for the shingles, but after I stop certain ones, I will be able to get the vaccine. Prior to the attack, I wasn’t aware that a shingles vaccine was available. I had heard about it in passing, but it was never something I thought I needed at age 62. Now, all I have to do is show someone a picture of my shingles infection and they leave my house and go get the vaccine right away.

I could never have imagined my life would change so much because of shingles.

Who would have thought? – Amanda’s story

By: Amanda Davis

The first time I had shingles, I noticed my left leg was extremely itchy just hours before leaving for work. I didn’t think much of it – I just thought I had an itch, so I kept scratching. But soon, my leg wasn’t just itchy, I began to feel a lot of pain in the area I was scratching. The clinics weren’t open because it was the weekend, so I went to the emergency room. The ER doctor diagnosed me with shingles and prescribed Acyclovir^®. With the help of Acyclovir, this first episode of shingles cleared up quickly, only lasting about four or five days. I didn’t have any residual effects or pain after the first episode. I thought I was done with it. That was seven years ago.

Additional shingles outbreaks

After my first shingles episode I thought I’d never get it again because the doctors told me the chances of this happening were very low. You could imagine my surprise when, just two or three months after my first episode of shingles, I had another outbreak on my left side. I could tell an outbreak was coming because a week prior to the blisters showing up, I had severe, localized pain on my left side. For that entire week I couldn’t sleep on my left side because the pain was so terrible. I called my doctor immediately to get another prescription of Acyclovir, which again shortened the duration and severity of my outbreak. Unfortunately, I started to experience residual effects after this second shingles outbreak. I soon noticed that I’d randomly get a shooting nerve pain on my left side. The pain would be so bad that it felt like someone was holding a fire next to my leg and my toes would hurt really badly, too. To this day, I still have the terrible nerve pain.

Since then, over the past seven years, I’ve had probably about 100 outbreaks of shingles — always on my left side — on my arm, hip, behind my knee and on my thigh. To be honest, I think I’ve lost count. My outbreaks are pretty sporadic, but I’ve noticed that they tend to occur when I lose a lot of sleep, start to get a cold, or if my allergies are acting up. If my nose starts to feel stuffy, that’s my cue to expect a shingles outbreak and just a few days later, the pain usually starts. Who would have ever thought a very mild case of chickenpox that I had when I was younger would turn into something like this?

Determined not to let shingles affect my life

When I had my first outbreak of shingles, I was pretty self-conscious about it because I was so young. I was only 21 — how could I possibly have shingles? When I started to have recurring episodes, it really started to bring me down and make me feel depressed. I couldn’t help but wonder why I was going through all of this. When would it stop? I was tired of hurting and feeling sick all the time. I wanted to focus on what I wanted to focus on in my life: my children, job and family. I didn’t want to be forced to spend a lot of time focusing on shingles and when the next outbreak would come. To this day, I still feel this way, but I think because I’ve had so many episodes, I’m better able to cope with it now. If an outbreak is coming, I deal with it. I don’t let it slow me down because I have a life to live and children to raise. I don’t have the option to stay in bed all week during a shingles outbreak. I have to deal with it so I can keep living the life I want to live — and that’s a life that’s not dictated by shingles.

Shingles vaccine

An infectious disease doctor recently suggested that I receive the shingles vaccine in between my outbreaks, so I did as the doctor suggested and received the vaccine in hopes that this will help prevent future outbreaks. I experienced a localized reaction to the vaccine − redness and swelling that was itchy and painful. I also developed a small, itchy, painful patch of shingles on my left leg. I’m really hoping that the vaccine will help prevent these outbreaks in the future because it would be nice to wear what I want without worrying about people questioning the scars that I have from previous outbreaks.

Editor’s note:

Anyone who has had chickenpox can get shingles. One out of 20 people will experience shingles a second time. Severe, debilitating pain, known as post-herpetic neuralgia (PHN), occurs in 1 or 2 of every 10 people who experience shingles.

My experience with shingles – Kevin’s story

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 50 years old and older.

Shingles affects daily life for a long time after initial infection – Jim’s story

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 – a young woman’s story

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.