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PHN Awareness Day.

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The American Pain Foundation (APF) has designated September 16, 2010 as the second annual PHN Awareness Day.

The second annual awareness day. I think from that you can tell how unaware people are of and about PHN. Yes, even doctors. Yes, even doctors who specialize in nerve damage. And especially me in mid-March 2008 right before I got that awful pain in my arm.

What’s PHN? PHN (post-herpetic neuralgia), is nerve pain caused by complications from shingles. During the shingles infection nerves (usually but not always near the shingles rash) become damaged. The damaged nerves send abnormal (and extremely painful) signals to the brain, or as my doctor put it the nerves “freak out.” The pain can recur for months, years, or even become permanent. As of right now, there is no cure, there are only various ways to manage the pain.

How bad is the pain, really? The pain from PHN can be disabling. The thing about the PHN is that it’s chronic pain. I never realized how exhausting that could be until I experienced it for myself. For me, there are five distinct different types of pain and sometimes they combine. First there’s the numbness and tingling, that one’s not so bad except when I want to, say, type or use my hand. Then there’s the feeling of having long, sharp needles poked into my flesh. Then, the feeling of electricity coursing through my nerves, which often makes me twitch. That one’s especially fun because it feels as if my nerves are constantly firing. Then, my favorite, the weird and constant itching that is impossible to resist so I scratch and then endure excrutiating pain. That last one is often combined with the allodynia, or as I like to think of it, the jackpot of PHN symptoms. The hypersensitivity of my skin and nerves makes everything hurt worse and longer. Allodynia is the worst, the absolute worst. Allodynia makes it so that the feeling of my own breath across the skin of my arm is excrutiatingly painful. So is the brush of my shirt, a piece of paper, the heat from the sun.

What can you do about the pain? You can try many different drugs, ranging from lidocaine patches to deal with surface pain, to anti-convulsants (which can leave you groggy and with brain fog), to tricyclic anti-depressants, to opioids. You could also try TENS (electrical stimulation of the nerves). So far I’ve personally had no luck with any of the drugs, though I’m reluctant to try opioids because of their addictive nature.

How do you get PHN? Anyone who has shingles has a chance of getting it, some say the ratio is 1 in 5. It’s more common to get PHN as you age, with people 50 and older having a 50% chance of getting PHN and people 80 and older having an 80% chance. [Source]

So what’s Shingles? Shingles can first manifest as pain in a certain area. You may experience itching, burning, or tingling sensations. Later, a painful rash or cluster of blisters appears. The rash is very painful and can leave permanent scars. Depending on its location, it can also cause damage to nearby body parts, such as eyes.

How do you get Shingles? You ever had chicken pox? Then you can get shingles (herpes zoster). The chickenpox virus (varicella zoster) can go dormant in your nerve tissue after an outbreak and it can stay quiet for a long time until it pops up years later to cause shingles. Approximately 1 in 3 people will get shingles in their lifetime, with people 50 years or older, who have weakened immune systems, who take certain drugs, and who are suffering severe stress being at higher risk. [Source] The risk of getting shingles again is also 1 in 3. [Source]

So if I’m under 50 and/or never had chicken pox I’m safe, right? That’s what I thought. I was 38 when I got shingles and to my knowledge I’d never had a solitary chicken pox anywhere on me. I must have had such a mild case that even my mother never noticed. Since I got shingles I’m finding more and more people well under the age of 50 who not only had it but who, like me, went on to get PHN. I’m thinking that 1 in 5 ratio is either way off or far more people are getting shingles now than ever before.

Then what do I do to protect myself? There is a shingles vaccine, Zostavax, that was approved by the FDA in 2006 for people 60 and older. It is said to prevent or reduce the intensity of a shingles outbreak. It is currently not covered by all health insurance plans. If you think you have shingles, get to the doctor as soon as possible. Early treatment with an anti-viral medication may lessen the duration and intensity of your shingles infection. (Note: I took an anti-viral well-within the 72-hour period, had a very painful infection, and still ended up with PHN. There are no guarantees, but err on the side of caution.) You may also be prescribed topical and/or oral painkillers.

What’s the bottom line? As a PHN sufferer I’d say that right now things look pretty grim. There is nothing you can do to prevent yourself from getting shingles (if you’ve ever been exposed to the varicella zoster virus) and if you do get shingles there is nothing at all you can do to prevent yourself from getting PHN. If you do get PHN, there are no drugs specifically made for it (don’t you believe what Lyrica says on TV, they’re an anti-convulsant called pregabalin), though some of the drugs may work for you, at least to a degree. The best thing to do is be aware of the traditional shingles pains–itching, burning, tingling–and rash, and see your doctor immediately if you suspect you might have shingles. If you can afford it (the cost ranges from $200-300) you might want to get the vaccine yourself, despite your age and health insurance coverage.


Written by tldegray

September 16, 2010 at 5:00 pm

3 Responses

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  1. i did not know it was PHN Day… I cannot sleep as of right now, it is 2:56am on the east coast and ironically i have PHN… im 24 years old and was diagnosed with Shingles 2 and a half years ago… I have had PHN for 2 years now and it has taken from my life tremendously… it was comforting to know you weren’t OLD or above 60 because I cannot find anyone else my age who has this! i am stuck in a rutt b/c of PHN, i am very frusturated because what should be a wonderful time in my young life isn’t. i have TRIED EVERYTHING except acupunture and shock (those two aren’t covered by insurance and are very expensive)… nothing has worked except oxycodone and hydrocodone… yes, the drugs are scary bc addictive, but i went through all the other steps before considering this and was at my last straw before throwing in the towel for the “monster” drugs… im sure my body has a dependency but i take them for the pain not to get “high”. im just living on day to day basis because I cannot make any future plans… i do not know where this is going to take me… i feel tired and exhausted. i’m not a vivacious person anymore.


    September 17, 2010 at 7:02 am

  2. Molly,I personally know of at least one other person who, like us, was young when she got shingles then PHN. You are not alone, even though the doctors and literature might make you feel as if you are. In my own way I know what you mean about living day to day and not being vivacious any more. It’s an unbelievably draining illness, both physically and emotionally. Sometimes I just want to sit down and cry because I feel so miserable and so helpless.Please, contact me any time. Sometimes it helps just to talk to someone in a similar position.Tammy

    Tammy DeGray

    September 17, 2010 at 10:35 pm

  3. Wow, can’t believe the similarities in our experience. Like you, I had shingles 4 yrs. ago at 38 in my arm. Still suffereing from PHN. 😦

    Colette MacEwen

    September 16, 2013 at 7:30 am

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