Slacking
Slacking with some reason. Since the arrival of the Beast in earnest, I've been looking for a trend to latch onto for discussion. A month on and it's become clear that the only trend is that things do not get totally out of control on the current medication regime. I did grit my teeth and up my Gabapentin to the prescribed dosage (800 mg thrice daily, enough to flatten a Budweiser Clydesdale).
Yes, I get occasional Goofies, as well as other less agreeable side effects from time to time. (More on that below.) The proper dose, plus the Baclofen, seems to have shored up the gates against the full-on, out of control breakthroughs that have so often made going to Hell look more like a reward than a threat by comparison. One can't relax the vigil, however. I've taken a couple of long anti-cabin fever walks in our recent mild weather and wound up regretting both of them.
Later on, I may have to educate the new neurosurgeon, as I did one when this started, about the imprudence of tapering the dose. Back then, I was only a few days into his optimistic taper when I had a really unmanageable breakthrough. In full summer, which really sucked. The jury is still out on the question of whether my mystery right-side neurovascular compression is manifesting TN symptoms. As I commented in the last post, I have no idea if I had precursors. I have to work hard to remember any life without TN.
Today I finally shipped off my paperwork and DNA sample for the Yale study into the genetic origins of trigeminal neuralgia. It appears one has to be selected for the study, as I was. That is owing mainly to having landed in the right hospital, with the right neurosurgeon. My particular neurological freakishness may also have made Dr. E think I was a good candidate. At any rate, there are a few clinical hoops to jump though, followed by a pile of red tape and an agreement to do a DNA "buccal" (cheek) swab. Oh, and this isn't a paid study. It may not even make chances of a cure, or even better treatment, possible in my lifetime. It's paying forward for the next generation. I have a daughter, who agreed to take part in the study. If the Yale hypotheses are correct, and genetics do play a role in TN, she is at risk. As a woman, she is at greater risk, as TN affects women over men by a ratio of about 5 to 3. I would pay it forward in any case.
I don't have a particular aversion to medical red tape (I handle it for a living), but the questions required one to describe the experience of my episodes as objectively as possible, and how if at all the experience has changed over the years. The Beast was kind enough to drop by to refresh my memory about the current state of things, and I've looked back on my old posts to see what my impressions were several years ago. It's somewhat disagreeable to relive the older experiences. One gets through this by not looking back too much.
I had quite a round of side effects today, which unfortunately started when I was on the road. The most interesting one was a line of thought that morphed into a hallucination of a melting face a la Raiders of the Lost Ark. (Clinical knowledge is very helpful at moments like that, as in "oh, what an interesting hallucination," vs. "God, my face is melting!")
When I had got myself back home and into bed, I had two consolations. One was our cat, who came up on the bed to give me a once-over before lying down and staring at me intently. It reminded me of the joke about the vet, his cat scan and his lab work. I felt I'd had the cat scan and was now under observation.
The other is a little harder to keep in mind. I consider that side effects, unusually intense now because of the change in dosage, are the price I pay for not having breakthroughs two or three times a day for two or three months of the year. The breakthroughs were the initial price for not having unmanageable pain eight months a year. Most of the time, the side effects are a fair trade.
Today's experience bordered on the unfair, which made me glad I had the cat scan to smile about.
Yes, I get occasional Goofies, as well as other less agreeable side effects from time to time. (More on that below.) The proper dose, plus the Baclofen, seems to have shored up the gates against the full-on, out of control breakthroughs that have so often made going to Hell look more like a reward than a threat by comparison. One can't relax the vigil, however. I've taken a couple of long anti-cabin fever walks in our recent mild weather and wound up regretting both of them.
Later on, I may have to educate the new neurosurgeon, as I did one when this started, about the imprudence of tapering the dose. Back then, I was only a few days into his optimistic taper when I had a really unmanageable breakthrough. In full summer, which really sucked. The jury is still out on the question of whether my mystery right-side neurovascular compression is manifesting TN symptoms. As I commented in the last post, I have no idea if I had precursors. I have to work hard to remember any life without TN.
Today I finally shipped off my paperwork and DNA sample for the Yale study into the genetic origins of trigeminal neuralgia. It appears one has to be selected for the study, as I was. That is owing mainly to having landed in the right hospital, with the right neurosurgeon. My particular neurological freakishness may also have made Dr. E think I was a good candidate. At any rate, there are a few clinical hoops to jump though, followed by a pile of red tape and an agreement to do a DNA "buccal" (cheek) swab. Oh, and this isn't a paid study. It may not even make chances of a cure, or even better treatment, possible in my lifetime. It's paying forward for the next generation. I have a daughter, who agreed to take part in the study. If the Yale hypotheses are correct, and genetics do play a role in TN, she is at risk. As a woman, she is at greater risk, as TN affects women over men by a ratio of about 5 to 3. I would pay it forward in any case.
I don't have a particular aversion to medical red tape (I handle it for a living), but the questions required one to describe the experience of my episodes as objectively as possible, and how if at all the experience has changed over the years. The Beast was kind enough to drop by to refresh my memory about the current state of things, and I've looked back on my old posts to see what my impressions were several years ago. It's somewhat disagreeable to relive the older experiences. One gets through this by not looking back too much.
I had quite a round of side effects today, which unfortunately started when I was on the road. The most interesting one was a line of thought that morphed into a hallucination of a melting face a la Raiders of the Lost Ark. (Clinical knowledge is very helpful at moments like that, as in "oh, what an interesting hallucination," vs. "God, my face is melting!")
When I had got myself back home and into bed, I had two consolations. One was our cat, who came up on the bed to give me a once-over before lying down and staring at me intently. It reminded me of the joke about the vet, his cat scan and his lab work. I felt I'd had the cat scan and was now under observation.
The other is a little harder to keep in mind. I consider that side effects, unusually intense now because of the change in dosage, are the price I pay for not having breakthroughs two or three times a day for two or three months of the year. The breakthroughs were the initial price for not having unmanageable pain eight months a year. Most of the time, the side effects are a fair trade.
Today's experience bordered on the unfair, which made me glad I had the cat scan to smile about.
Labels: medications, side effects, TN, trigeminal neuralgia
posted by Uncle | 02:12
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