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La varicelle

July 26, 2013

When I was twenty-one, I lived in Paris for a semester and worked as an au pair. One day, the three children I looked after spiked fevers and cried and wiggled and complained and broke out in angry red spots. “Have you had chickenpox?” their mother asked me, as we stuck them in oatmeal baths and fetched washcloths for their heads and popsicles for their throats. I told her I must have, at some point, though I didn’t remember. “You must have, though I don’t remember,” my mother said, in a letter that arrived three weeks later, just as the children’s last scabs were falling off.

The very day her letter came I started feeling woozy. Twenty-four hours later I was a mess. Chickenpox as an adult is no fun. I had horrible sores all over my face, in my throat, on my scalp, behind my ears, in the creases of my elbows, under my arms, between my fingers, on the palms of my hands. I couldn’t eat, and my glands swelled up so much it looked like I had mumps. The boyfriend I was living with (secretly, in my tiny chambre de bonne on the ninth floor) taped newspapers over both our mirrors so I couldn’t wail about how freakish I looked, and walked all over Paris looking for Cream of Wheat, for which I developed an insatiable craving.  (He never found it, alas, not even in the American grocery store.) Even after the worst had passed, I had hideous scabs for weeks. (The French, when I boarded the métro, avoided me as if I were a leper, which I suppose I was, in a way.)

“Well, at least you won’t get shingles when you’re old,” my boyfriend told me. His father was a doctor. “People who get la varicelle when they’re grown-ups seldom do.”

When I was thirty-five, my older son was seven and my younger son was a year and a half old. The baby was easy-going and cheerful and gorgeous, but he never, ever, ever slept. And then one day I woke up with a bad headache and swollen glands and a weird rash on my right ear.

“Shingles,” the doctor told me. “Ramsey-Hunt syndrome, actually. You might have some facial paralysis, or chronic pain, or hearing loss, or vertigo, or all of those.” I went home a little baffled, for surely I was not under undue stress? I didn’t feel stressed. (I took antivirals right away, and the rash faded and I was basically fine, barring a little bit of deafness in the affected ear, and a little bit of tinnitus that comes and goes.)

“The good news, though, is that you can’t get shingles twice,” the doctor said. “It almost never comes back again, after you’ve had it once.”

A month ago, I got a headache. A terrible headache, a spike of pain lodged behind my right eye, which seemed to be having trouble focusing. I spent a lot of time putting a hand over my left eye, then my right, then my left again, trying to figure out what was going on. Things were blurry in a strange way–a kind of fishbowl effect, actually–and the headache laughed in the face of painkillers. I was tired, and sad, and I slept a lot. Maybe crying is making my eyes feel weird, I thought. Maybe this is some somatic manifestation of grief.

And then I got a bump–a familiar feeling bump, accompanied by a familiar burning feeling–on the side of my nose.

Shingles. “It’s the fifth cranial nerve,” the GP told me, as he wrote the prescription for antivirals. “Luckily, that’s not the nerve that affects your eye.” I went home and googled “fifth cranial nerve.” (My ex-husband is, after all, a neuroscientist, and he teaches Human Brain Anatomy to med students every fall. We’d looked up all the cranial nerves on one of his cool brain imaging programs when I’d had shingles the first time.  I was pretty sure the fifth cranial nerve did affect the eye, and both Google and the ophthalmologist I called that afternoon confirmed I was right.)

“You might have damage to your cornea or retina, facial paralysis, encephalitis, or a stroke,” my mother said, reading from the internet in a panicky voice. “Oh my god! This is serious! You have to get acupuncture! I’ll pay!”

The rash never quite took off. The headache retreated. The ophthalmologist dilated my eyes, looked inside, and proclaimed my cornea and retina in perfect shape. A month later my glands are still swollen, though, and I’m tired and grumpy and my right eye still feels a little wonky. “The good news is that you can get the shingles vaccination,” the ophthalmologist said. “You might have to pay for it out of pocket, though. Insurance won’t pay if you’re under 50, because most people under 50 don’t get shingles.”

I’m forty-five. “Get the vaccine! I’ll pay!” my father said.

I’ve got an appointment with an acupuncturist next week. I’ll get vaccinated, I guess, when I feel fully myself again. It’s all quite mysterious. Has anyone else had shingles?

43 Comments leave one →
  1. Was Living Down Under permalink
    July 26, 2013 11:13 am

    Oh dear – I hope you feel better soon. And that the vaccination works. I heard that shingles can come back – that once you have it, it’s always there – lurking as it were.

  2. July 26, 2013 12:54 pm

    More than 10 years ago my husband got shingles at the exact same time that David Letterman had it? them? Is shingles singular or plural? A friend asked him, “Oh, is Bruce Willis going to sub for you at work as well?”

    • irretrievablybroken permalink*
      July 28, 2013 5:51 pm

      I just googled David Letterman shingles and boy did he complain about it a lot…

  3. July 26, 2013 1:47 pm

    All I know is when my grandmother had shingles she said it was far and away the worst thing she ever had. And this is a woman for whom the anesthetic wore off in the middle of a tonsillectomy and the doctor told her to just sit tight.

    You are the second person my age to have gotten it this year, and I didn’t know that was possible. Next trip to the doctor I’m getting vaccinated.

    • irretrievablybroken permalink*
      July 28, 2013 5:52 pm

      ugh. I’m lucky, so far it truly hasn’t been that bad. I think it is worse the older you get. Or so they tell me (but they tell me all kinds of conflicting things about shingles…)

  4. Susan permalink
    July 26, 2013 1:48 pm

    My understanding is that the shingles vaccine serves to “expose” the immune system to the features of the varicella virus in order to build up your immune system’s “memory” of the virus. By having shingles, it seems as if you’ve essentially done the same thing: exposed yourself to the virus. I’d be curious what the vaccine would add. (This said, I want to make it very clear that I am very strongly PRO vaccination. Vaccines are one of the most important health and public health innovations modern medicine has ever invented.)

    I’ve never had shingles, but I’ve nursed a couple of people through it, including someone who had the same trigeminal nerve/eye involvement as you. It’s a miserable affliction. Here’s hoping you suffer no lasting effects!

    • irretrievablybroken permalink*
      July 26, 2013 2:37 pm

      I can’t get a straight answer from ANYONE (not even Lord Google) about the potential benefit of a vaccine after having had shingles already. This happened last time, too: one doctor urged me to get the vaccine, another said it would do no good if you’d had the virus, and the internet was mute. Seems impossible that I can’t find any information.

  5. Brenna permalink
    July 26, 2013 2:59 pm

    I had shingles when I was 21 and pregnant with my first child. I had it on my abdomen, and it was absolute hell. I’m 35 now, and the thought of getting it again makes me shudder.

    • irretrievablybroken permalink*
      July 26, 2013 3:11 pm

      So basically it’s a huge lie that only old people get it, huh? More and more people keep coming out of the woodwork to say they had shingles when they were 20, 30, 40, etc.

      • October 1, 2013 4:24 pm

        I’m a long-time lurker who clearly hasn’t been keeping up with your blog as well as she should’ve been. but I had to respond to this, because within the past couple years, my husband & my friend/coworker/carpool buddy–both of whom are in their early/mid-30s–got shingles. (the not-entirely-facetious joke was that prolonged exposure to me must be the culprit.) & then, just THIS MORNING in a weird twist of synergy, I got an email from an employee saying he was out sick with shingles–he’s in his 70s (& doesn’t spend much time around me, fortunately for that theory), but still.

        I’m assuming you’ve recovered by now, but my GOD do I hope I never get shingles. & they clearly need to lower the age of that vaccine threshold.

  6. July 26, 2013 4:44 pm

    My immune-suppressed father had shingles some years ago. I suppose than when I have attained 20-25 years as an immune-suppressed individual, I too will be vulnerable. Time to read up on that there vaccine….

    Good luck with the acupuncturist. I adore mine; I have a tiny suspicion that you live near me, so email if you need a recommendation.

    • irretrievablybroken permalink*
      July 27, 2013 10:18 am

      I’d get the shot sooner rather than later, if at all possible…worse to wait too long than to jump the gun.

  7. amellie permalink
    July 27, 2013 6:19 pm

    My 19 year old (fully chicken pox vaccinated) daughter developed shingles on the back of her knee spring semester of her freshman year of college. It spread from the knee to the ankle, then up the nerve to her hip where it invaded her hip joint and up to the middle of her back, in spite of prompt antiviral treatment. The end result is that she failed all of her finals and, ironically, that included physiology where the stress of learning all of the nerve paths probably contributed to the development of the shingles in the first place! We were told 1) they are very likely to reoccur 2) the vaccination will not help at this point because of the recent immune boost caused by the virus exposure 3) they are seeing a huge surge in shingles cases in immunized kids and young people as the vaccine is attenuated live virus 4) they are seeing a huge increase in cases in the under 50 crowd because, the hypothesis is, that adults are not getting the immune boost caused by exposure to children with chicken pox. We were told this at a very well respected top 10 children’s hospital where we took her for treatment of the hip joint. And people whose kids or themselves who had single came out of the wood work : 3 seven 7 years olds in one gymnastics class, a 23 year old teacher who was hospitalized and on an on. My doctor would not give me the vaccine as I am not yet 50 but I am getting it as soon as I can! Hope you feel completely better….

    • irretrievablybroken permalink*
      July 27, 2013 9:08 pm

      God, ugh, how awful for your poor daughter, I am cringing as I read this, just imagining that slow viral creep. Yours is the first explanation I have heard that makes sense…I have never been around any poxy kids, because everyone is vaccinated these days. Of course. Mine too.

      But all I wonder is…once this particular flare-up has fully subsided, will the vaccine help prevent or possibly lessen the severity of future attacks? I have been lucky so far in that the effects have been mild. But the fact that my face and eyes and ears are affected (and possibly brain, too, I suppose–which will leave me nothing once I’m hideously disfigured and blind and deaf, more’s the pity) scares me.

      You can pay for the shingles vaccine out of pocket, even if you’re underage, I believe. (Will this be the last thing we get carded for?) It’s expensive, but something tells me it might be worth it.

      • amellie permalink
        July 28, 2013 2:03 pm

        My doctor won’t give it to me off label as “not enough data in your age group” even if I pay for it out of pocket. This is the same answer we got about vaccinating both the college age kid after her bout and the younger aged kid (as they got the chicken pox vaccines at the same time due to when it became mandatory we wondered if they got a less than stellar batch of vaccine).

    • July 29, 2013 4:21 am

      My friend’s son got shingles on his torso at the age of 16 (also when he was studying for his exams!), so it increasingly looks like the ‘old people get it’ reputation is wrong. He used antivirals but also applied a lot of aloe vera which apparently helped.
      I hope you feel better soon!

  8. July 27, 2013 7:42 pm

    sweet jesus, i’m so glad you don’t have a brain tumor, which is exactly what i would have concluded in your place. i came down with chicken pox three days before leaving for college. i got it from my cousin, whose mother (with full knowledge of her condition) sent her along on the two-week family trip to the jersey shore on the theory that anyone in our clan who hadn’t already had the chicken pox needed to go ahead and get it. i looked exactly like i would imagine a leper must look when i left for school, and twenty-five years later, frankly, i’m still pissed at my aunt.

    thinking now i need to go ahead and get that vaccine. this shingles business is bullshit. i hope you’re all better soon.

    • irretrievablybroken permalink*
      July 27, 2013 9:09 pm

      I totally thought I had a brain tumor. I was resigned to it, in fact. I thought, “Well, my grandmother is dead, and now I’ve got a brain tumor, oh well, should I refuse treatment, or try anything to buy more time so the kids will have me around as long as possible? Maybe I’ll contact Dignitas in Switzerland.” I thought about it every single day, and just shrugged and kept on taking pointless Advil. I figured it would become clear one way or the other in any case.

      • July 29, 2013 1:13 pm

        freaky and, perhaps, demented as it sounds, though, i think there’s a certain vindication in coming down with something like this after the experience you’ve had. i developed pre-eclampsia 6 weeks after my MIL died, despite never having had a high BP reading in my life (or my first 2 pregnancies). when the midwife told me what was happening, i kind of felt like she was offering me objective proof that my emotional pain was real. “look how much you’re hurting! your liver and kidneys are shutting down!” grief acts on the body…we all know that, and yet it can still surprise us when we see it.

  9. Jenertia permalink
    July 27, 2013 8:25 pm

    Bah, yes. I had chicken pox when I was five – complete with adorable, miserable photos of me sitting forlorn in the bathtub, slathered in calamine lotion – and followed it up with shingles when I was 32 (no photos). I was on immunosuppressive drugs, so my doctor was able to diagnose me and get me on the antiviral right away, thank goodness. I was lucky, in that it was pretty awful, but not as bad as some poor folks I’ve heard (mine was mostly confined to blisters and pain on my left-hand side, so no eye/ear/face involvement).

    I hope this fresh hell of yours clears up soon. And never, ever comes back.

    • irretrievablybroken permalink*
      July 27, 2013 9:12 pm

      I, too, have heard horror stories…so I feel both lucky and unlucky at once. Dumb creeping virus. The good news is that my tremendous beauty is (so far) unblemished. The rash was fleeting. The headache still comes and goes, though, and my eye still feels…creaky and stiff. That’s the only way I can describe it. And I’m tired all the damned time.

  10. irretrievablybroken permalink*
    July 27, 2013 9:13 pm

    Maybe I should take some miserable bathtub pictures for the record.

  11. July 28, 2013 9:48 am

    Sounds to me, you need to get immune system checked to determine whether you are chronically compromised or temporally compromised. Chrinic or acute stresses can cause them. A cheap way to maintain a good immunity is to run daily outdoor. Trust me, I am Ms. know everything.

    • irretrievablybroken permalink*
      July 28, 2013 5:54 pm

      I actually started running daily again after a long hiatus just before I broke out in the telltale spots. (I had thought running would help the headache.) It was just enough to make me remember how much I love running and how calming it is.

  12. July 28, 2013 6:15 pm

    Wow, I certainly hope you never have to go through this again! Amellie’s comment is interesting. My daughter, who was vaccinated against chicken pox, got an intensely painful rash on her hand when she was 14 and stressed about starting high school. I’m pretty sure it was shingles, although we didn’t go to the doctor. One of her classmates also had shingles, confirmed by a doctor. My daughter’s case cleared up, but long after the pain was better, the skin where the rash had been looked like it was recovering from a bad chemical burn.

    • irretrievablybroken permalink*
      July 28, 2013 6:43 pm

      Sounds like shingles to me. That post-rash discoloration is something I’ve heard about, too.

      But, see, why can’t those of us who have had shingles once (or twice, like me) get the vaccine? I mean, wouldn’t it boost the immune response to this particular virus, which our bodies are clearly having trouble coping with?

  13. Penny permalink
    July 29, 2013 11:16 am

    I hope you get feeling better soon. I am so sorry to hear you are going through this hell.

    • irretrievablybroken permalink*
      July 31, 2013 4:43 pm

      Thank you. I’m actually lucky by the sound of it!

  14. July 29, 2013 11:28 am

    Shingles is one of those things that I vaguely dread when I am lying awake in the middle of the night…and I must say that neither this post nor any of the comments help at all (get vaccinated! don’t get vaccinated! get Chicken Pox! don’t get Chicken Pox!). That said, I find retroviruses so completely compelling that I half want to go back to school just to study them.

    And I am totally tickled by the idea of carding for the vaccine. “Sorry, ma’am, I’m going to have to ask you to stand over here while I run this driver’s license through a verification check. Remember, presenting false identification IS a chargeable offense.”

    • irretrievablybroken permalink*
      July 30, 2013 11:43 am

      I never thought I would still get denied something because I wasn’t old enough!

  15. July 29, 2013 3:17 pm

    It’s weird I’m reading this today. My mom called last night to tell me she had shingles. A huge swath from under one breast all around and up her back. She got the anti-virals and perhaps some pain meds and she’ll be out of work until the blisters pop and scab. I have a friend who has gotten them for almost a decade now, in a specific spot on her cheek. I don’t know if we’re seeing more cases or if I myself just happen to know some people with nutty immune systems. I have never had the chicken pox (“You must have!” my mother insists, “We probably just didn’t notice. Maybe that one time with the rash on your palm.”) so I’m dreading this whole thing. Are they genetic, I don’t even know!

    I know that they are painful. Really sorry you’re still recovering.

    • July 30, 2013 8:37 am

      If you’ve never had chicken pox you must be careful to avoid your mother (and your friend, etc) while she has shingles. Even though I assume she had the pox ages ago, it will be contagious while she has shingles; the virus is sort of resurrected after years of being dormant. There is apparently a hereditary element to shingles, but this will not affect you if you don’t get the pox in the first place. Maybe now is the time to be vaccinated so you can sidestep whole nightmare altogether!

      • irretrievablybroken permalink*
        July 30, 2013 11:42 am

        I was just logging on to post this very advice!

  16. Amy Crowell permalink
    July 29, 2013 4:17 pm

    I also had shingles when I was in my early 20’s. Several lines of “zits” along my chest and back on my right side. I went to the dermatologist, and he told me it was shingles, and once we had the chicken pox, that virus was in our systems, and could manifest as shingles at any time. He said I would be less likely to get shingles AGAIN, but that it wasn’t impossible, and that very little was actually understood about WHY. Good luck getting over it, seems like mine lingered forever, too.

    • irretrievablybroken permalink*
      July 31, 2013 4:44 pm

      I love that it’s so mysterious. Well, actually, I don’t.

  17. Shes permalink
    July 31, 2013 8:44 am

    OH, GOD, YES! Sorry for hte melodramatics, but that’s how it felt. I had the chicken pox twice as a child. Doctors will tell you it’s impossible, but it’s obviously not! Once was a milder version, and once wasn’t. When I was early 20s? I had what I thought was a horrible cluster of spider bites (woke up that way), that was agonizing to move, on my back, on one side. You betcha, shingles. Very bad ‘inside’ pain, hard to describe. Took forever to clear up. I thought I started getting it again once….creeping, vague, uncomfortable feeling along nerve….but luckily it didn’t go full-blown. I was wondering myself if the vaccine would help, cuz I never want that ^&*#@#%^ stuff back again. Good thoughts for a speedy reccovery your way….

    • irretrievablybroken permalink*
      August 2, 2013 6:24 pm

      That weird creeping uncomfortable nervy feeling…it’s unmistakeable. Shudder.

  18. Martha permalink
    August 2, 2013 4:26 pm

    My husband (57) developed shingles last December and still gets shooting pains off and on. At the time I had only known a very few people who had ever had it, but right around that time I became aware of several people both in real life and online who had it, some of them were under 50. My husband’s doctor had told him at the time that December was an odd time to get shingles, that February is usually the big month for them! The youngest person I ever knew to have them was a friend’s daughter who was around 12 at the time.

  19. irretrievablybroken permalink*
    August 2, 2013 6:12 pm

    I think the first time I had them was February! Though, you know, I’m a bit skeptical (why February?) So did anyone suggest to your husband that he should now get vaccinated?

    • Martha permalink
      August 2, 2013 11:44 pm

      It has been suggested by some of our friends, but the doctor didn’t mention it. A woman I work with has had shingles twice, and her doctor wants her to get the shot, but she is afraid it will bring on another case of it. I doubt that’s possible, but she has suffered so much, she is afraid to have anything to do with it. I plan to get the vaccine even though our insurance doesn’t cover it (at any age). I’d like my husband to look into it too, but he’s a great foot-dragger when it comes to medical things. He did go as soon as he suspected shingles because we know it’s important to get medication ad soon as possible, but he hasn’t been back.

  20. Rebecca permalink
    October 24, 2013 1:28 am

    I actually came down with Shingles when I was only 10 years old, believe it or not. A dinner plate size patch on my inner right thigh/groin area. I still have a cluster of faint scars and I’ll never forget the ferocious stabbing nerve pain.

  21. Ann permalink
    October 26, 2013 9:58 pm

    I had shingles this past January. (My brother who lives four states away came down with it the same day I did. I found this out after the fact. I had seen him two weeks before at Christmas. I made a doctor’s appointment because I had bruised my rib from a fall at Christmas. The night before the appointment, I told my daughter when we spoke via the phone that “A red raspberry looking rash is popping out on my left leg as we speak. I will have to ask the doctor to take a look at it.” When the doctor saw me, she immediately said, “You have shingles.” The good news is that I began taking the antiviral meds within 24 hours of my outbreak. Oh, I had had the vaccine the year before. What I most wanted to share was that I had a relatively mild case (confined to one leg) from what I have gathered from others who have had it, but the burning pain became almost unbearable. It felt like my leg was burning up literally. Fortunately, I called my doctor’s office to see if there was something they could prescribe. (This was not mentioned at my doctor’s visit. I was just told to take OTC pain meds.) Fortunately, there is something they can prescribe–it is a seizure medicine that they have found helps with the shingles nerve pain. It was a godsend. On the next visit with my doctor (she is a younger internest whom I like a lot), I told her how bad the pain was and how well the seizure meds work. I suggested that she may want to volunteer that this medicine is available to her patients with shingles so that they know something is available if the pain becomes almost unbearable. So, remember, raspberry rash and to ask for the seizure meds for the pain.

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