Remember all that talk about how the bout with shingles wasn’t really all that bad? Yea, about that… apparently, shingles doesn’t just go quietly. It pillaged and burned as it went through my central nervous system, and while on the outside the visible damage is nearly gone, under the hood, the story is a little different.
It’s called postherpetic neuralgia, it is the result of nerve damage done by the shingles virus, and it wasn’t pretty. One minute I was sitting there, holding a good friend’s ten-day old baby boy. The next thing I know, a searing pain shoots form somewhere in the back of my skull towards my right eye – to the area the shingles resided just a few short weeks ago. A pounding headache followed, and I saw stars, curled up on the sofa. The entire right side of my face went numb. My eye felt like it was burning from the inside out.
I would say it felt like a cattle prod, or maybe a Tazer, but since I haven’t been prodded or tazed, the only analogy I could come up with was “(willingly) getting an electrical charge from a 12 volt battery on Spring Break in Metamoros”, although that one is kinda hazy, too. It was a cross between a shooting pain and a sharp continuous throb, an oxymoronic clashing of “This consistently hurts, and is somehow getting intermittently worse.” The best way to describe it would be the personification of two live wires touching – again, and again, and again – for a full minute. Every new touch, the pain increased a little bit.
Luckily, I was able to hand off baby Jude before any damage was done, but it hurt like hell for a few minutes, and took a good 20 minutes more before I felt somewhat normal again. Being that a majority of my difficult days happened months ago, and I have experienced minimal pain since then, this came from left field and caught me totally unprepared. Even when the shingles set in, it sort of built up to a slightly miserable, but very tolerable, existence. This was a bolt of lightning from nowhere; except, much like Ron Hextall, the lighting struck twice, as it happened again Thursday. The residuals lasted well into the night, keeping me up late tossing, turning, and trying to avoiding rubbing the slight pulsing sensation I felt coming from somewhere inside the right eye socket.
The kicker is that I have been gradually feeling better since the singles cleared up, and was confident I had escaped some of the more severe effects I had heard or read about. Itching set in for awhile, and still occasionally pops up. I have been light sensitive the last several weeks – sunlight mostly, but any fluctuation in light seems to make the head hurt and the vision a little blurry. Even the computer monitor or television flicker makes a difference; I constantly squint when facing a TV, especially in a darker room. So while I felt better, there were clearly signs that the fun wasn’t fully over. Still, I just sort of nodded politely when the infectious disease doctor told me last week that the nerve repair could be painful. I have gutted out four surgeries, several other “procedures” and numerous infusions… how bad could a little recovery pain be?
The good news is I have no idea how long this will last, or when it will flare up, and there’s no cure, just treatment to manage pain. Oh wait, that is the bad news. There really isn’t any good news. Since there is no cure, we just deal with it until the nerves regenerate. I have a prescription for the nerve blocker Lyrica that will ease the jolts but cause drowsiness – looks like I won’t be doing much driving or operating heavy machinery over the next month or so. Or longer; they don’t know when this will go away, it could take weeks or months. Some extreme cases never do fully heal.
I shouldn’t say there isn’t good news – just not specific to shingles. Football is starting and I have to take it easy on the sofa, so there’s a bonus (oddly, football on TV seems to minimize the effects. Go figure.) The doctors at Moffitt reviewed my scans, and not only did they concur with the findings from Holy Cross, they opinioned that the dominant lesions in the liver and spleen appear to be necrotic, with dead tissue in the middle of the tumor. The dead tissue may not shrink as quickly, so a drop in the percentages is expected and not something to worry about; either way, it was clear to them that disease level was down significantly.
A little more pain certainly seems to be unnecessary, but if these are the hurdles I need to clear, so be it. Just remind me not to get overly cocky next time a medical roadblock pops up.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »