Y’all might want to skip this one. It’s (mostly–I added a story at the end that’s more entertaining) just the gory details of my almost six weeks dealing with shingles. I’m writing it just for myself, really. Though I will say to anyone who reads this far–if you haven’t had shingles and/or the vaccination for it yet, count yourself lucky and go get the vaccination. Unless you never had chickenpox–in that case, you’ll be OK. I’ve kicked myself a lot for not getting it when I could have— I’ve basically lost six weeks of prime time to the damn shingles. And it’s not really over yet.
So–first symptoms on June 2, felt like I’d been stung or bitten by an insect or spider, on my scalp about and inch and a half back of my right ear. Rapidly escalated–miserable night, up and crying with the pain. Like little lightening bolts going off. Toughed it out for two nights, then went to the doctor the next day, mentioned the possibility of shingles, but he decided that wasn’t it because he didn’t see any lesions. I’m STILL not happy about that decision, because lesions don’t always show up, and certainly don’t show up right at the beginning, and he knows that. If he had prescribed me the antiviral that day, it would no doubt have been more effective, because it would have been within the 72 hour time period they tell you to get an antiviral. Turns out that’s because it’s only effective when the virus is replicating. Instead, he prescribed a pain killer and sleep aid, which were mostly useless, plus the pain killer had acetaminophen in it, which makes me nauseous. Spent a really miserable weekend, sleeping very little, up out of bed and wailing when the pain spiked. You can do that when you live alone.
Back to the doctor on Monday, by which time there were plenty of scabbed-over lesions to show him, so he agreed it was shingles, changed the sleep aid and pain killer, and added an anti-viral.
The next weeks were at best not good and at worst miserable. The pain was up and down, sleep aids only sorta worked, opiates made me constipated and I’m still trying to get my gut back on a steady course, did a second round of anti-virals because after the first set of scabs, which covered maybe 40% of my skull by then, fell off some new ones developed so I thought maybe that indicated the virus was still active. The scabs coming off was a miserable couple of days, because they itched, so I had the delightful experience of my scalp simultaneously itching, hurting when touched and sometimes hurting just because, and on parts, being numb to the touch. I was sorta sleeping, using ibuprofen PM or diazepam, ice packs, and still more ibuprofen to get through the nights.
I’m not sure how long it was after the scabs came off, but just when I was starting to be slightly more hopeful that I was on the road to recovery, I had a weird experience. A wave of the most intense pain started on my scalp, and traveled across the whole affected area. It was like having heat lightening on my scalp. It was so intense it put me on the kitchen floor–I had headed to the kitchen to get an ice pack when it started. Probably lasted five-ten minutes, then subsided to normal levels. I was afraid the phenomenon might recur, but so far it hasn’t, to my great relief.
I was tracking my pain and energy level pretty closely–I am a Virgo, after all–and noticed some improvement the first few days of the second round of anti-viral. However, the week after that there was no improvement, and when the anti-viral was finished, the pain seemed to be maybe getting worse. So that Tuesday–last Tuesday as I write this–I went back to the doctor, carrying an ice pack along, which made an impression. He decided I have post-herpetic neuralgia (PHN–you can look it up), which means nerve pain that lingers after an outbreak of a herpes virus, the culprit in chickenpox and shingles. He prescribed gabapentin and, when I asked for them, lidocaine patches for my neck. My shingles were in the facial nerve, and the pain had spread to affect areas of my neck, face, and ear. The neck pain was doing more to keep me awake at night that my scalp pain by that point.
The jury is out (sorta. See story at the end) on whether or not the gabapentin is helping, but the lidocaine patches are an unmitigated success. The doctor mentioned almost in passing that I was probably suffering from quite a sleep deficit, and I think he was more correct than I even realized. I woke up the next day feeling good for the first time in weeks. My brain worked, I had some energy, and I didn’t have to fight pain for the an hour to two hours as I had been doing for the past several weeks. The neck pain overall hasn’t returned to the levels it was at (though there’s a little point on my jaw that is acting up as I write this–makes me wonder if just thinking about it is activating the nerve.)
Some time ago I had bought a number of things that I hoped might soothe the pain when it twinged. Yesterday I noticed that this
Is 4% lidocaine. The patches are 5%. I had been wishing I could apply a patch to my scalp to calm the nerves there, but not quite willing to shave off my hair so 1) the patch would stick, and 2) the lidocaine would make it down to the skin. I decided to glop a whole bunch of the alocane on, and leave it an hour or so–sort of imitating a patch. It definitely soothed the scalp. When bedtime came, I was SO sleepy I didn’t want to shampoo it out, so this is how it was when I woke up this morning.
It really did help. I made it through the night without ice, and my scalp is sore but not getting the sharp pains that it has been. I did shower this morning and shampooed it out, but I’m going to do it again tonight. I keep thinking if I had the skill, I could do a stylish do–the consistency isn’t that different from hair gel.
Better sleep definitely leads to better energy, but after six weeks of mostly languishing in my recliner or on my couch, doing the bare minimum necessary to sustain self and critters, sometimes not even taking Scamp for her walks, my strength and stamina are definitely down and need to be built back up.
One more story. When I woke up Wednesday morning feeling so much better, I wanted to DO THINGS and GO PLACES. Checked the tides, and the tides Thursday and Friday were just right for a morning beach walk, so I decided to go for it on Friday morning–take the van, walk on the beach, have lunch there. Gabapentin makes me feel spacey and woozley, so I was nervous about driving the van for the first time in over a month and driving it so far under the influence, so to speak. Tried doubling up on the gaba Thursday night and skipping the morning pill on Friday, and headed off to the beach feeling pretty good.
It was beautiful.
Grabbed a couple of sticks for Scamp and headed for the water. The idea of two sticks is throw one and when she brings it back, she drops that one so I’ll throw the other one. It sorta works. We set out walking into the wind, towards “the rocks”, as I think of this outcrop.
They didn’t look all that far away, and I was feeling pretty good, and I usually walk much further, so I figured that was a good goal.
However, I had underestimated just how much strength and stamina I’ve lost, and maybe underestimated the distance too. I didn’t quite make it, deciding to go back before I was completely out of gas. When we were nearly back, I saw a couple of guys standing around chatting, as I assumed, and a woman and (I thought) her dog just coming onto the beach. Got a little closer, and realized she was videoing something. Looked more closely, and saw this.
He walked like his feet hurt (though for all I know, that’s just how porcupines walk) and seemed to be rather intent on getting to the water. However, when I called Scamp and knelt down to put her leash on, he turned and headed our way. Scamp of course by then had homed in on him and wanted to go check him out. I had to pull her back quite forcefully at one point.
I’ve encountered porcupines there before, though always in the grass and brush up by the cliffs, never right out on the beach.
I’m calling it “he”, but it could have been a she for all I know. But it reminded me of a slightly scruffy, grumpy old man, so he it is. He gave up on the water and headed back for the cliff. I wrote to a friend that I could practically hear him grumbling “Come down for a nice dip in the ocean, maybe get me a little salt, all these people and dogs standing around staring at me, stupid dog wants to check me out, good thing for her she got stopped, can’t get any peace around here, whole thing’s not worth it, might as well go home”, and she came back with “Now see, you should write a little book called, “The Porcupine Monologues.”” I love the idea of a book–or blog–with that title, but am not sure I’m quite up to it 😄.
I did have lunch there, with this view.
On the drive home, I was feeling the stress of having tried to do just a bit too much, and the scalp and a couple of spots of neck pain were back, but it was so good to get away and do something different it was all worth it. I don’t think I’ll skip the gaba again, though, when I decide on another outing. Maybe it’ll stop making me so spacey? I can always hope. And I’ll make sure I have ibuprofen along with me. The pain only went back in its cave when I had my wine. The wine definitely works on the pain–too bad it has such negative side-effects of its own, or I’d just control the pain by drinking all day.