I very briefly flirted with Quantified Self and then jumped off the bandwagon because it was making my personal signal:noise ratio worse. But my neuroendodontist* has given me several drugs, and he wants to know how they work. Allow me to give you a brief list of things that make measuring this difficult
- Treatments are all on varying schedules- some daily, some daily with a build up in blood stream leading to cumulative effects, some as needed to treat acute pain, some on my own schedule but hopefully having longer running effects. Some are topical and some are systemic.
- I have several home treatments like tea and castor oil. I’m not going to not take them in order to get more accurate assessments of the drugs, both because ow and because pain begets pain.
- Taking treatments as needed + regression to the mean = overestimate of efficacy.
- Pain is affected by a lot of non drug things: sleep, stress, temperature, how ambitious I got with food, amount of talking, number of times cat stepped on my face in the night, etc.
- We are hoping some of these drugs will work by disrupting negative feedback loops (e.g. pain -> muscle tension -> pain), which means the effect could last days past when I take in. In the particular case of doxepin it might have semi-permanent effects.
- Or I could develop a tolerance to a drug and my response to a particular drug will attenuate. That is in fact one reason I was given so many choices as to medication: to let me rotate them.
- We have no idea how these drugs will interact with each other in me. We barely have an idea how the interact in people in general.
- If I believe something will help my pain will lessen as soon as I take it, long before it could actually be effective. Not because I’m irrational, but because my brain reinforces the self-care with endorphins, which lessen pain.
- At the same time, having more pain than I expected to feels worse than the exact same pain level if it was anticipated.
- Side effects: also a thing.
“I think I feel better when I take this one” was not going to cut it.
Then there was the question of how to measure pain. Ignoring the inherent subjectivity of pain, neuralgia is a weird beast. I already hate the 1-10 pain scale because pain has threshold effects and is exponential. I could create a single pain number at the end of the day, but my pain is not constant: it spikes and recedes, sometimes for reasons, sometimes not. What I would ideally like to track is area under the curve of pain**, but that requires polling, which would create horrible observer effects. If I ask myself if I’m in pain every 15 minutes, I will increase my total pain level. I could poll less often, but the spikes are random and short enough that this was not going to be accurate enough to evaluate the treatments. I could count pain spikes, but that ignores duration. Determining duration requires polling, so we’re back where we started. I could deliberately poke a sore spot and see how bad the resulting pain is, but
- A treatment that doesn’t affect sensitivity but does keep me from spontaneously feeling pain because the nerve is bored is a success. If we wanted me to be numb we would do that.
It’s just really hard to measure something when your goal is for it to be unnoticeable, and measuring it creates it.
So I came at it from the other side. What happens when pain is unnoticeable? I enjoy life more and I get more things done. Could I measure that? Probably. They have the bonus of being what I actually care about- if something left me technically in pain but it no longer affected my ability to enjoy or accomplish things, that would be a huge success. If something took away the pain but left me miserable or asleep, it is not solving my actual problem.**
So one metric is “how much I get done in a day”. Initially this will be the first number between 1 and 10 that I think of when I ask the question at the end of the day, but I’m hoping to develop a more rigorous metric later. You’d think enjoyment of life couldn’t ever be rigorously measured, since it’s so heavily influenced by what is available to me in a given day, but I say that brave men can make it so. And so I introduce to you: the kitten pain scale. Kitten videos vary a little in quality, but I think my enjoyment of any single video reflects my internal state more than it does the video. Three times a day (shortly after waking up, shortly before screen bed time, and sometime mid-day that can vary with my schedule but must be selected ahead of time to avoid biasing the data), I will watch a cute kittens video and record how much I enjoy it. The less pain I am in the more I should enjoy the video. This will give me a (relatively) standardized measure of pain without risking inducing it.
This is still not what you would call a rigorous study. An individual choosing what to take among known options never will be. But I seriously think the kitten pain scale could be a contender to replace the stupid frowny faces. My first draft is available here. Right now it’s set to measure over the course of a day, because that’s the scale I expect from these meds, but you can add bonus measurements at set times after taking meds if you like.
Possible additions: cups of tea drunk in day. Right now that seems like too much work to measure, but when tea is available it’s a pretty good indicator of how much pain I’m in.
*I am still angry that I know what that is, much refer to one using possessive case. But given that, I am extremely grateful I live within biking distance of a world class research facility in the discipline. Even if the physical facility could be a case study in how economic insulation leads to bad user experience.
**This is why none of my treatment options are opioids. Strong ones technically reduce pain, but they also leave me miserable. The fact that some people take them for fun is all the proof of human variability I could ever need.