The Kitten Pain Scale

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

  1. Ow
  2. 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.

Adventures in Dentistry and Neurology

I forget if I mentioned it, but I had nerve damage from the first dental surgery, way back in June.  Everything else healed up more or less all right, but that one kept hurting.  Actually it felt like two damages- one that was healing, albeit slowly, and one that was staying static or getting worse.  The prospect of living with that pain for the rest of my life was really daunting.  Medical marijuana, which had been so helpful at first, was having more side effects with fewer desirable effects every day.  It eventually became clear my surgeon had no idea what was going on or how to fix it so I went to a neuroendodontist, a subspeciality I really wish I wasn’t already familiar with.

toenailectomy looks awful but feels like nothing at all.  A neuroendodontal exam is the exact opposite.  It looks like some guy very gingerly touching around your mouth, but he is not only deliberately provoking pain, he needs you to pay attention to the pain and report on in it excruciating detail, while you remind yourself that inaccurate reporting leads to inaccurate diagnoses.

For all that pain, I actually got very good news.  Even though it feels like I have two distinct damages, it’s actually only one, and it is healing.  Nothing is guaranteed in neurology but existing data is consistent with this eventually healing itself.  And in the meantime, he gave me new and different medicines.  We’ll see what the side effects are, but at the very least I have options to rotate through.

Adventures in Podiatry and Neurology

WARNING: THIS ONE IS GRAPHIC EVEN BY MY STANDARDS.  NEEDLES, PAIN, AND TOENAILS.

Recently I learned toenails aren’t supposed to be under the skin of your foot and hurt constantly; this is an ingrown toenail and it’s a solvable problem.  By “recently” I mean a year and a half ago, but a little pain when I flexed my toes in a shoe did not seem as important as the pain in my mouth or my inability to digest food, so I only got around to seeing a podiatrist now.  If you develop an ingrown toenail there are home treatments to coax it better, but if you’ve always had it the cure is a little more drastic: they cut off the bit of the nail that has grown under the skin and cauterize the nail bed so it never grows back. If you are curious, here’s a video of the actual medical procedure:

The worst part is the lidocaine injection. There’s a topical anesthetic, but they root the extremely thin nail around under your skin in order to find the nerves and inject directly over them. The podiatrist will describe it as slightly painful, but they are lying, and it will make you doubt them when they promise the rest of the procedure is painless. That part turned out to be true: with enough lidocaine you genuinely can’t feel them slip the scissors/pliers under the nail bed, or the burny stuff*, unless you are a freak who processes -cain very quickly, in which case they will give you more and it will stop hurting.  But the anesthetic injection was pretty brutal.

That is not actually the interesting part. In between the lidocaine and the scissors/pliers, they test your numbness with what looked like a large blunt toothpick. My podiatrist, which more flourish then was strictly necessary, brought it down from a great height onto my toe.

I screamed.

Then I realized it didn’t hurt at all. My brain had combined the memory of the painful needles and the visual information about incoming sensation and preemptively sent a scream response before it noticed I couldn’t feel anything. I never had quite that strong a reaction again, but there was an extremely weird dissonance as I watched something I knew should hurt, yet got only vague reports of pressure from the area.

This works in reverse too.  Phantom limb syndrome is a condition in which people missing a limb (even one they never had) experience excruciating pain where their brain thinks that limb should be.  One of the only effective treatments is mirror therapy, where a mirror is used to simulate the appearance of the missing limb, and somehow the brain goes “oh, I guess it’s fine.”  This clip from House is not quite as accurate as the matrixectomy one (mirror therapy rarely involves kidnapping), but the science is sound.

The lesson here is that even something that feels incredibly simple and real, like pain, is in fact an artifact of post-processing on several different inputs.

*Dr. Internet says phenol but I could have sworn it started with an M. In my defense, he gave me the proper name after the needles bit and I was fuzzy.

Cannibidiol for pain: a partial retraction

Earlier I described CBD as having absolutely no effect on cognition.  This turns out to be wrong.  I’ve subsequently found that CBD does impair cognition somewhat relative to optimal, it just does so less than pain.  And at least for me, it doesn’t wear off quickly: if I take it at night I’m in less pain the next day, but I also have trouble focusing for long periods and doing truly complex work.  It feels like I can’t get far enough away from problems to see the whole of a thing.  If my choices are “in pain and dumb” or “not in pain and dumb”, I choose door 2, but this does make me more forgiving of NSAIDs.

In other news, they finally took my bone spur out and wow, I’m in a lot less pain.

Harm mitigation vs. cure

Scott Alexander has a very good post up about semantics and gender, which you should read in its entirety even though it is very long.  I have nothing to add to his main thesis, but there is a cute little anecdote about a woman with OCD whose life was nearly ruined by her fear she’d left the hair dryer plugged in, no matter how many times she checked it or how far she was from her house.  She was on the verge of living on SSDI for life despite trying every therapy and medication in the book.

Finally, a psychiatrist suggested she keep the hair dryer with her.  This transformed “checking if the hair dryer is unplugged” from a 40 minute task (to drive home and back) to a 2 second one.   The psychiatrists at the hospital were divided on this.  Scott doesn’t specify, but I assume the argument against was that you have to rip the problem out by its roots.  OCD is anxiety in search of a cause and if you assuage this one she’ll just find something new to worry about, and if you keep treating the symptoms she’ll end up loading her car with every appliance she owns every day.

This strain of thought is not baseless, and I think it’s important to keep in mind when developing population-level guidelines for treatment.  I also think that any doctor that argues that hairdryer therapy for this particular woman should be sent to a reeducation camp, because

  1. it worked, so shut up
  2. root-cause psychiatry and psychology had their shot.  They had in fact emptied an entire clip into the problem and had no more bullets.  At that point, unless something is actively and immediately harmful, they need to gracefully exit the field.

There’s also the matter that the problem was not just “she felt bad”, but also “she’s about to lose her job.”  Jobs are important.  They provide the money and health insurance that let you go to fancy psychiatrists that don’t believe in hair dryers.  Even if you’re independently wealthy, jobs are important psychologically and socially.  SSDI is oriented around the problems of factory workers who lost limbs, and really does not work well with people with high-variance mental disabilities, who can do some work some of the time but cannot function at the level society demands.   If hair dryer therapy does nothing more than buy you six more months before she experiences a negative shock from which it is very difficult to recover, that’s actually pretty good.

Even more than that, I think the psychiatrists are underestimating palliative care.  I absolutely do not think overcoming mental disorders is a matter of will power or wanting it enough, but I do believe that human brain and body are very good at repairing themselves, and that this implies that any non-traumatic disorder that persists must be in a self-reinforcing loop.  Chronic pain lowers your pain tolerance, worry that something will trigger a panic attack makes you anxious.  Pain and depression are mutually reinforcing.  Mental Illness saps your energy and cope and time, which makes it difficult to seek and follow through on treatment.  “Palliative” care like pain killers and anti-depressants give people energy they can use to heal, which is why oncologists sometimes prescribe them. For big scary things we don’t know how to cure, freeing up the patient’s own resources may be the most helpful thing we can do.

Meanwhile, my EA group is debating this article on charitable giving, which articulates something I’ve been trying to say for a long time, and not just about charities.  American capitalism is set up to encourage shooting the moon.  We’ve carried that over to charity, trying to find The One Simple Trick To End Poverty.  That is toxic on many levels: it doesn’t exist, we can’t measure finely enough to detect it, the most effective thing now is not going to be most effective thing after we’ve done it to death, finding things that work is a massive expense in its own right, and oh, poverty is a system of many millions of moving parts.  Waiting for the silver bullet is doomed and immoral, and perhaps a bit like refusing to let this patient adopt a hair dryer as her constant companion.  Yes, treating the root cause would be better, but it’s not on the table.

But that doesn’t mean we can stop doing RCTs and start firehosing money again.  It is tragically easy for aid to make things worse.  This is what the anti-hair dryerists were afraid of: that putting a salve on the symptoms will make the root problem, and thus eventually the symptoms, worse.  Possibly much worse.  Most people who gave food aid did it with the best of intentions: even the American agricorp executives who benefited probably convinced themselves this was a way of giving back .

So: you can’t tell people it’s cure or nothing, but you also have to be really careful with palliative care.  It’s even harder for charity, because you have to consider the externalities, not just the affect on the recipients.  This is one good argument for donating local, even if distant recipients are dramatically worse off: you will naturally get and give more feedback on a local charity’s effectiveness.  It’s also a very good argument for restricting yourself to charities that measure their effectiveness, almost independent of what the measurement says.  When we don’t know what to do, gathering new data is a good in and of itself.  And small pareto improvements may eventually free up the resources for societies to heal themselves.

…and the Wisdom to Tell the Difference

I haven’t gotten too much into my own dental stuff because I spend enough time thinking about it as is, but the current count is:

  • 3 completed surgeries
  • 2-5 more planned, depending on what you count as a surgery
  • painful nerve damage on the lower right
  • a hole in my lower left gum.  You can see a good chunk of bone if you look in my mouth.

After the last surgery (wow, two months ago now), my pain level actually dropped significantly.  We took out a major part of the problem, which not only helped on its own merits, but meant I stopped clenching/grinding, which made the nerve damage on the other side stop hurting continuously.  It was still touch sensitive, but I can handle that.  My ability to focus skyrocketed, limited only by my exhaustion.  I dropped CBD in favor of naproxen, and then didn’t need anything at all. I read a book a day for a month.  You can roughly see this increase in focus in my blogging, although the signal on your end is a little messy because publish can come long after writing, unless wordpress screws up, which it usually does.  I went on forays to the library to practice thinking around other people.  I even started to program a little bit.*

Then the surgery site started to hurt.  And my upper right (which needs surgery but hasn’t had it yet) began to ache from the sudden chewing burden.  I saw myself faced with two possible paths: a life where the pain just kept increasing and no amount of treatment could keep up with it, and I was never able to accomplish anything because it rendered me stupid, or a life where I was never in pain and I went on to be Brene Brown’s more medical second coming.   Obviously future #2 is better than future #1, and in future #2 I don’t take pain medicine, so I needed to just keep not taking pain medication and everything would be fine.

Causality does not work that way

If you’d tracked self reported pain it probably wouldn’t have gone up that much, because I have a lot of practice pushing dental pain out of conscious awareness.  But my reading rate plummeted, and I stopped going to the library.  Blogging which had felt like a thing I needed to do to clear my head a week before now felt like a chore.

I had just started to give in and take more CBD when I had a follow up appointment with my dentist, who explained that there was a hole in my gum where the jaw was growing in order to push out an infection.  I started crying the minute he said it.  I went home and took real pain meds.  A few days later, when I didn’t have to drive anywhere, I took twrugs o days and took way more pain medication than I consciously thought I needed.  Since then I’ve continued taking more-than-forebrain-thinks-is-necessary at night, but NSAIDs only during the day.  My reading and writing productivity has picked up significantly, talking barely hurts anymore, and I feel safe being in touch with my pain level again.

This is what I call the “nuke if from orbit” pain medication option, and it really seems to work.  Catching the pain before it “settles in”, or sending a surge against it, moves the baseline pain level back significantly, and lets you use less drugs over all.  The reluctance or inability to do this is another casualty of our awful attitude towards pain, where medication is essentially viewed as a failure of the individual to tough it out.

But nuke it from orbit doesn’t always work either.  Right now I’m in a tiny bit of pain.  It would take a lot of drugs to get that to zero, possibly an infinite number.  I faced a stronger version of this problem right before the last surgery, where the nerve damage side just kept upping the pain level to keep up with whatever amount of drugs I took.  In that case, I was better off simply accepting that pain was the state of being I was in right now.  The most helpful thing to do was meditate, except that while meditation often helps by relaxing the jaw, meditation for the goal of pain relief doesn’t.  Since most of the emotional impact of the pain was frustration and fear over my ability to think (read/write/plan) while in pain, practicing thinking while hurting would definitely lead me to look back more fondly on the experience, although it probably would have led to more distress at the time.

The first lesson here is to treat for the pain level you have, not the pain level you wish you had.  The second is to aggressively counteract pain at the first peep of its head.  The third is to learn to live with pain instead of fighting it.  I guess this is one of those “wisdom to tell the difference” situations.

*Fine, I started to set up a dev environment and that took two weeks because I was still very sleepy and android development studio is stupid.

Pain, part 2: Options for Treating Pain

Anesthetic (e.g. Novocain):  This is a very good option for when you need to block an extraordinary amount of pain in a very specific area for a short period of time (e.g. dental work).  However, as someone who received nerve damage from surgery that exactly mimics the effects of local anesthetic, I can tell you that it is not a long term solution.  Feeling nothing is actually very weird, and makes it easy to injure yourself.

Non-steroidal anti-inflammatories (e.g. ibuprofen):  These are great for occasional use, and have their place for long term pain caused by inflammation (e.g. arthritis).  But they carry some heavy risks for long term use.  One, inflammation is often a helpful reaction.  Topical NSAIDs helped my cat’s pain but retarded the growth of blood vessels in the eye which ultimately made the problem worse*.  Suppressing a fever can prolong illnesses.

NSAIDS are also hard on the stomach, which is bad for everyone, but especially bad for someone like me, who has long running stomach problems that interfere with my ability to absorb nutrition.  I completely wrecked my stomach with naproxen the week before surgery.

COX-2 inhibitors are a subclass of NSAIDs that target pain pathways more specifically, while sparing the gastic pathways that cause so many problems.  The problem is they also increase the risk of coronary events, to the point many were taken off the market and others restricted to single use post-surgery.  They’re so out of favor for pain relief that the three different medical professionals I begged for dental pain relief didn’t think to suggest them, even though I have many gastric risk factors and essentially no coronary risk factors.

Even before realizing COX-2 inhibitors might be perfect for me, I was very angry that they had been taken off the market.  The coronary risk was limited to a small subset of patients, of even of those, some might very well choose to live a shorter life in less pain, because pain is depressing.

Non-NSAID analgesics (e.g. tylenol and asprin): You know how new drugs like to advertise themselves as “safer than asprin?”  That’s because asprin is actually pretty dangerous.  Not super dangerous, but dangerous enough it might well be denied FDA approval today.  Asprin is also a blood thinner, which is great for coronary patients but terrible for dental patients because it can melt the blood clot protecting the surgical site, leading to dry socket.  Some descriptions down play dry socket, but it is in fact both extremely painful (because it exposes a nerve to open air), and dangerous (because it leaves the wound open to infection).   Tylenol is the world’s worst way to commit suicide, because there are several days between the point of no return and actual death, and they are extremely painful.

Opioids (e.g. heroin): I’m told these are super fun for some people, but I have had many different kinds over the years (as one dentist after another fucked up trying to fix my mouth), and I hate them.  The milder ones (everything short of percoset) do nothing for me, and the stronger ones (percoset) are so supremely unpleasant I would rather be in pain.  The only exceptions were when I was literally dying of norovirus, and whatever opioid they gave me was apparently integral to me not dying, and when I got dry socket.  And even with dry socket, I only took them to sleep, because they were just so awful. I refused to even get a prescription this time, because they just don’t work for me.

But even for people who find opioids tolerable, they have serious risks.  They depress respiratory function, cause constipation, and reduce mental function.  They’re insanely addictive on a chemical level- which doesn’t mean everyone who takes them once is hooked forever, but does mean that most people who take them will go through an unpleasant withdrawal period, no matter how “legitimate” their reason for use.  People develop tolerance to the pain relief faster than to the negative side effects, and quitting them may leave them in more pain than they were when they started.  For all these reasons, opioids are pretty much exclusively used for acute pain management and terminal patients.  Doctors who stray outside this risk serious sanctions from the DEA and FDA.  Even if I found opioids tolerable, there is absolutely no way I could have safely used them for the months of surgery + recovery I am going through.

And because I’m working my cat into everything: he doesn’t like opioids either.  Even after having four teeth pulled he fought me on taking his medicine, and then he just stood around in a stupor and drooled.

Tricyclic antidepressants: This is a cutting edge use of a very old drug.  I was prescribed topical doxepin by the doctor who did the research proving it was useful for oral pain- and even then, he was researching a different kind of oral pain.  It had some ugly side effects: I fell asleep immediately upon taking it, and couldn’t stand being touched (anywhere) the next day.  It left some numbness that lasted indefinitely- when I ate spicy food I could feel in my throat where the liquid had trickled down.  On the plus side- it left some numbness that lasted indefinitely.  That was a huge improvement over the shooting pain I’d had before.  I eventually stopped because the permanent effects had boosted me to the point it didn’t hurt that much, and the side effects were getting worse, but it was overall a great experience.  If I hadn’t found something better it’s what I’d ask my doctors for now.

Capsacin (aka spicy food): This really only works for dental pain.  When you eat capsacin it activates all your pain receptors at once.  Which hurts a lot, but then you’re good for a couple of hours.

Cannibidiol (i.e. marijuana): This one isn’t as well researched as the others because it’s illegal at the federal level (although, I must stress, legal in my state for both medical and recreational use).  But everything we know about it is awesome.  People tend to use THC and marijuana interchangeably, but that’s not true at all.  Any given strain can very in the amount of THC and CBD, and some strains may not have any THC at all, or the treatment may not activate it.  THC causes a lot of the symptoms traditionally associated with marijuana use, like munchies everything being funny.  CBD causes nerves to stop hurting for no reason, and may do a bunch of other awesome things like reduce inflammation, encourage bone growth, decrease anxiety, fight cancer, and (I can only assume) whiten your teeth while you sleep.  There is essentially no way to kill yourself with it** and there’s no physical dependency.  I used this off and on after all three surgeries, and my use naturally trailed off after each one.  It either doesn’t have any effect on me mentally, or the effect was less than the pain it was stopping.

THC may work synergisticly with CBD.  In my case it makes me sleepy, which is a terrible trait for a recreational drug but an amazing one for convalescent therapy.

A note for dental use in particular:  you are not even allowed to use a straw, so you definitely cannot smoke anything.  The nice people at the medical dispensaries have precisely dosed pills, and if you are lucky, CBD tinctures.  These are meant to be taken sublingually, but if your pain is in your mouth you can apply them to the area and everything stops hurting really really rapidly.  It gave me an amazing sense of control over my pain and enabled me to take more risks, in terms of eating and talking to people, which really sped up my recovery.

I don’t want to get too much on the “yay marijuana” bandwagon, because it’s entirely possible that as its usage becomes more widespread we’ll find out it has some rare but nasty side effects too.  But I do think it’s a travesty it is treated as worse than ibuprofen or alcohol, when it is clearly better.

*I think his infection was also resistant to the first antibiotics they gave him.

**Weirdly, this may be true for humans but not pets.  When I investigated using CBD to treat pain from my cat’s corneal ulcer, I discovered that we are pretty sure there is no amount so high it can kill your pet in one sitting, but chronic use may lead to something resembling serotonin syndrome (aka the reason you have to be so careful when taking MAOI inhibitors).