Like the second bout, I've started experiencing a number of other physical symptoms that can only be related to the occipital neuralgia and the original spinal tap.
About two and a half weeks ago, I noticed that my right arm was extremely twitchy. At first, I didn't think anything of it; I knew that some anti-depressant and anti-seizure medications can cause some tremors. I went through the side effects of the medications I'm currently on, and found that only one of them has been noted to cause twitches and tremors, and only in less than 1% of reported cases of side effects. As the days went on, the tremors became worse and worse. Now it's so bad that I cannot hold anything in my right hand because I cannot keep a grip on it; drinks slosh out of my cups, pens go all haywire across a page, my cell phone ends up in my lap or on the phone. At first, it wasn't painful, more of an annoyance. Over the last week it's become quite painful - the muscles are always tense and moving, and it's exhausting.
Then about a week and a half ago, I was starting to get super achy all over. I didn't think anything of it at the time, because it happened during both the first and second bouts of this. I knew that the pain would start creeping down from my shoulders; I just didn't know when. Then last Saturday morning, I woke up at about 3.30AM (which, unfortunately, is my usual wake-up time these days), in such excruciating pain that I couldn't breathe or yell for help. My knees felt like they were being stabbed with poisoned, hot daggers down the muscles from right above my kneecaps to halfway down my thighs. It would pulse for ten or twenty seconds, then give me a 'break' to recover in which I could only sob and gasp, before the pain came again. This went on for hours. Then it went on all day. Then it went on all night. I didn't sleep at all Saturday night; I could only doze in and out consciousness between cycles. Sometimes I'd get twenty minutes between the pains; sometimes I wouldn't even get a minute's break. It didn't matter if I was moving or not, if I was standing or sitting or lying down. Nothing changed the intensity or the frequency.
At first, I blamed myself, because I'd felt well enough to go out for a bit on Friday night and managed to stand for two hours; I thought maybe my knees were simply staging a revolt because they hadn't been used much in a month. But as Saturday became Sunday, it was clear something else was wrong. We needed to go to Costco for the important stuffs, and I was already well gone insane, so I said I'd go with Patrick because I had to get out of the house or I'd break something. I nearly fell over more times than I can count in the shop; I kept having to stop and try not to scream in pain. It wasn't the best idea I'd ever had.
Then when I woke up on Monday morning, again around 3.30, I could add my right shoulder to the list. And the pain was spreading down from my knees into my ankles. Over the course of the week, it was from my shoulder into my right hand. My left arm hasn't troubled me yet. We'll see. I frantically called my neurologist because all these new, painful symptoms were appearing in such short succession, and seemed to be radiating out from the core. Dr. Crowell ordered a full battery of blood tests looking for any autoimmune problems, but all the tests came back clear. I hate when that happens; I always hope there's something wrong that can be seen in the bloodwork and then can be immediately treated with meds. Not my luck.
Right now, all we have to go on is damage not simply to the occipital nerve, but to the other nerves that route through the Atlas/C1 - Axis/C2 vertebra. All of the spinal and cervical nerves pass through this tiny spot. All of them. And because it's such a compact space, damage to any one nerve can cause damage to other nerves. When one nerve is essentially permanently damaged and inflamed, it puts pressure on the other nerves around it. Those nerves then start freaking out, sending and receiving incorrect electrical impulses to/from the rest of the body. And there is nothing anyone can do about it because the original problem - a swollen, inflamed occipital nerve, can't really be treated; all anyone can do is mitigate the symptoms.
I really, really wish I could take any painkillers. At this point, I'd gladly stop my anti-depressant and mood stabilisers for a while until I can not be in pain.
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