On Thanksgiving 2014 – I began to have symptoms of head/chest flu that grew immediately worse of the next couple of days, and it really laid me out for about three weeks. By the time I started feeling normal again – about December 19th, I had contracted Shingles
which evidently likes to attack when the body’s immune system is weak. The symptoms were a stabbing pain behind the right eye combined with an intense heat sore on the bridge of my nose at the brow that within a few hours turned into an eruption of several pustules… and it was spreading like poison oak. In fact, I thought maybe it could be poison ivy because the other doesn’t grow here in the Seattle area.
That weekend I was again laid out flat. No amount of Ibuprofen would knock back the pain behind the eye which rippled through that side of my head from front to rear. Could it a migraine? I never had one before. I attempted to treat the “poison ivy” with an antihistamine and Calamine lotion but they had no effect at stopping the spread.
Monday I caught a flight to California for Christmas; at the window seat – I couldn’t take the sunlight beaming in; horrible - wore sunglasses with the shades down. Midway through the 2 hour flight I was becoming really ill and considered for the first time that I need medical help. But my spirits rose as I meet family and pals – and for one afternoon I felt well enough, though I look like hell. Next day I go to this walk-in clinic and they misdiagnose the condition as “migraine with allergies”, and the doc gives me this miracle shot that’s supposed to provide migraine relief in 5 minutes. Nothing, no effect. It’s a rump shot, so he says I need to walk around. I decide to walk home; a good 20 minute walk. Nothing, no relief. I go back later that afternoon and they just kinda push me out the door saying that I have to deal with it. WTF?
Day before Christmas, Day-5 of misery, after 5 sleepless nights – my sister takes me to Emergency and that’s when we find out it’s Shingles. If you’ve had Chickenpox then you are a candidate for Shingles. You are only a danger to people that have had Chickenpox. But most people don’t know that, and my family treats me like I have the Black Plague.
My parents have had the Shingles vaccine, so they take care of me during my week stay in isolation. Forget Christmas dinner and festivities; I’m in lockdown and medicated to the hilt.
- Hydrocodone: A Vicodin variant. Lovely stuff; two tabs will make you feel like you’re back in the womb.
- Valacyclovir HCL: Antiviral giant blue horsepills taken 3X/day the first week, then eventually weaned down to once/day.
- Erthromycin 0.5% Ointment: Shingles is in my right eye butted up against the cornea. I goop my eye with this several times a day to relieve the inflammation which is horrendous. At Rite-Aid they charged me $300 to fill a prescription of 4 small tubes. My eye doctor was pissed when he found out cos you can buy it over the counter for cheap.
December 27th is the first day I feel better, mainly due to the pain meds catching up and saturating my body. The Shingles was at its’ maximum spread, covering the right front hemisphere from eye & brow to mid-way back. Lots of erupting pustules. I look a mess, but not as bad as that one guy on the Wikipedia article… If I had gone two more days without treatment… yeah it would have been real bad for me.
I flew home on December 31st and went straight to my eye doctor for a complete exam, and we began a close-contact relationship for the next couple of months where I’m checking in every 2-3 days with the intent of saving my right eye. Tried all sorts of drops to find relief. The best ones left painful crusts which inflamed the surrounding tissues, so while it was good for the eye they were bad for everything else. I tried eye washes but they brought no relief. Worst of all was my sensitivity to bright light which meant I was essentially blind during daytime and prevented me from working on the computer.
There were a few days in January where the pain was so intense it brought me to my knees crawling in agony: I had already figured out that ice cold water would temporarily reduce the pain. I had been trying to work at the computer when the pain suddenly grew worse and felt a burning sensation that led to a grand-maul-like seizure. The first time it occurred I thought it was a stroke; I just couldn’t imagine living through it curled up in a fetal position yet trying to crawl to the bathroom for relief. Cold water, lots of cold water stopped the pain. I had six of these episodes in 4 days, though through reflection figured out the pattern of onset: There’s like a 8-second fuse where I could feel the event coming on, enough time perhaps to get to cold water! There I yam watching football one moment, and the next dashing like a madman to the sink. It looked idiotic in front of friends, but I got it covered.
As the Shingles symptoms faded and the healing began, the 2nd stage of illness moved in and took over: Postherpetic neuralgia
. See, Shingles is the mutated form of Chickenpox; after recovering from that virus it goes off and tries to hide from the autoimmune system along the nerve ganglia of the spine. Then when the body is really weak or stressed out, the mutated form comes forward and expresses itself along the infested nerve bundle. This is why it appears as a rash that covers a particular region. In my case – It’s the right front quadrant of the skull that includes the eye, the worst possible condition because it can lead to blindness.
Postherpetic neuralgia is brought on by the nerve damage caused from the Shingles virus. It includes phantom pain sensations in the scar tissues that range from maddeningly itchy to being beat with stinging nettles to extreme burning hot lava! There’s nothing physically wrong with the body except for the misfiring of the pain and tactile sensors along the affected nerves. Shingles by itself lasts 2-4 weeks (mine seemed like 2 months), however the Postherpetic neuralgia can last for months or years following the initial attack, so it’s important to have proper diagnosis and immediate medical attention at the onset… which I didn’t get.
The other really odd sensation that I had (and still do to a lesser degree) is this feeling that spiderwebs cover my eye, or that I have hair or crusts in my eye so that I’m constantly rubbing it – and contributing to the irritations from the other symptom of “dry-eye” cause by dysfunction of the tear-duct because of Shingles nerve damage. I explained this to my brother the doctor and he suggested that I try Gabapentin
which turned out to be relatively inexpensive. The first time I took a tab it laid me out and I slept a beautifully long deep sweet sleep from morning till night. Then I had insomnia. Next day was a repeat of the first. There was no way I could handle the dosage – and they wanted me to take it twice a day. Eventually I worked it out to where I took it after work where it didn’t matter if I fell asleep. But that was the dope which put a major end to the unwieldy symptoms – and that’s when the major physical scar tissue began to fade. At one point the eye was so irritated that my Sister-in-Law got my an eye-patch; I looked a right true pirate. All I needed was a parrot.
About March I was able to wean myself off the pain meds, though still scabby into the first week of April with the scar tissue rising and exfoliating. The headaches are gone, but I still have some numbness and itching along the brow that drives me batty. I’ll be on Gabapentin for a while longer, but that’s about the only thing I take, in addition to eye drops: What worked best was Systane Ultra which can be had over the counter. One drop or two a day really makes a huge difference – especially with the pollen this time of year.
A word of caution: Don’t drink when taking these meds, or don’t take the meds if yer drinking. Meds are real hard on the liver, plus alcohol will magnify the effects – and they all will make you dizzy so just don’t go there. I didn’t miss beer those first two months, not when your body is all f@#$%&-over and feeling like death warmed. The priorities in life change: Every moment is focused on watching everything that keeps you healthy and functional. There were a few times that I couldn’t drive in daylight – so my pals came and got me. Even my eye doctor picked me up one time when I was in fear of driving after the seizures episode. People are kind when yer hurt, considerate and very sympathetic. I can’t imagine trying to hold down a 9/5 job with Shingles; in this case being self-employed was an advantage.
I kept a near-daily journal of this experience through the worst part mainly because I grew tired of giving repeated status to every individual in my family; instead I opted for weekly progress reports which kept everyone on the same page and I spent less time in front of the monitors. Journaling is I suppose a psychological treatment as well because although the Shingles virus is affecting the body, it was also screwing with my mind: I couldn’t do the simplest of math. Imagine asking the waitress if the tip was correct! I couldn’t do it on the calculator. Nasty horrible skull fuq – that’s what Shingles is
The measure of healing was not on the scale of day-to-day, but week-to-week. There have been bad days, and then worse ones after that. But don’t give up. Just keep chipping away at getting better. I have never had a major illness before so it was a wakeup call. Done lots of stupid things to my body; I’ll probably do more. But this Shingles $hite I didn’t ask for, no one gave it to me, there’s no test to indicate a warning, though most of us are carriers and are at risk. I’ve been told that once I have Shingles it could reappear again and again – although not as strong as the time before. Wow, what joy. There is however a Shingles vaccine that in most cases reduces the risk considerably and it is recommended to people over 60 years of age. I’m here to tell you – it can hit earlier in life, so why wait? I’m taking mine as soon as the Postherpetic neuralgia fades.
In other news, I’ve been tinkering on my ebike and finally made it into the 50 mph Club.
So much to do, so little time.
Take care, KF