So, I’ve had migraines since I was five years old. I’m at this writing, forty years old. About three years ago the migraines got really quite bad which sent even stubborn little me to the emergency room (once I could walk, as I refused an ambulance) and henceforth to a neurologist or two, and then eventually to my new dentist, not a quarter in which I had previously considered finding relief. But in the intervening 32 years, the pain was intermittent, not caused by food nor my menstrual cycle (which I pointedly did not have at five), and hugely influenced by stress and as it turns out muscle tension (which yes, unfortunately, I had in abundance starting at the age of five).
The migraines I had in those 32 years taught me a few things I’ve since been unlearning: chronic pain is normal, no one can help me, no one understands that when I say, ‘it hurts’, what I mean is, ‘this pain is more than I can emotionally deal with and I’m compartmentalizing like you wouldn’t believe so that we can have this conversation and you can just imagine I’m making it up because I’m lazy and don’t want to do my chores’, and that I am largely insensitive to pain because I’ve just had so bloody much of it. Also, I learned that the appropriate answer when someone asks, ‘how are you?’ is ‘I’m fine.’ I was anything but fine. But “I’m tired, it hurts, and I feel dumb today,” gets old after awhile.
I didn’t realize then that there were numerous secondary symptoms of migraines which were also affecting me in those 32 years, though looking back I can see them clearly now. Memory loss. Crushing fatigue. Inability to mentally focus. (Really, it’s a tribute to my IQ and sheer persistence that I was able to do as well as I did in school and get as many degrees as I have considering the state my brain was in all this time. It does give me great hope for what I can achieve now that my mind isn’t padlocked into an insensate metal box. But back to side effects.) I did notice the sensitivity to smells and to sunlight – it was hard not to notice when ‘sensitivity to light’ was rather better described as twin icepicks stabbing through my eyes.
The Historical Experience: Agony
I had kidney stones once, when I was a teenager. My mother was at work, I was home alone. After several hours, and once I began to writhe on the family room floor because of the pain which was far beyond anything I’d ever experienced yet in my life, it dawned on me that maybe I should see a doctor. I lived two blocks away from my primary care physician and three blocks from a major hospital. It never dawned on me to walk to the emergency room, but I did walk to the doctor. I blame the fact that I didn’t call anyone on the twin issues that a) I was in excruciating pain, and even at forty years old I still don’t make good decisions when in excruciating pain, and b) I was a fairly clueless teenager who had already learned in life to disregard moderate to extreme pain.
Everyone in the waiting room voted for me to go ahead of them, and the doctor saw me immediately. He had me admitted to the ER, and as it turned out, the secretary of my church was in the waiting room. She drove me the block to the hospital, and then told my priest, who visited me in the emergency room. And who called my mother. Who was not pleased to find out I was in the emergency room and was less pleased to be notified of this by our priest.
But I tell you this to say, hey. Once I had really bad kidney stones. I could walk, but just barely, and only by compartmentalizing the pain, knowing that relief was at the end of the walk. And I’ve heard it said that really bad kidney stones are about as bad as giving birth without anesthesia, which is about as bad as the average person without some horrific chronic illness has to be in pain.
Also, pain is subjective. And the human brain forgets what the pain was like – unless you try to encode the memory some other way. Like writing extensively about it. (Which, no shock, I have done, regardless of the fact that I’ve posted little here. It was too horrific to share at the time.) So really, when the doctor asks you, ‘on a scale from zero to ten, zero being no pain at all, ten being the worst pain you’ve ever had, how do you feel right now?’ you probably will have a hard time remembering the actual worst pain you’ve ever had unless it happened sometime in the last month or so, or unless you’ve written extensively about the pain, comparing it to other things.
So really bad kidney stones, or birth, would definitely be a ten, right? Except that most people don’t feel that kind of pain regularly, and they don’t remember it when they do. So the average person who doesn’t deal with chronic pain, for them kidney stones or natural birth would actually be a 12 or 15 on their own, subjective pain scale of 0-10.
Three years ago, when the pain started getting very, very bad for me, it was hard to describe it to other people because I didn’t actually think they’d believe me. Certainly, if I were writing this sort of thing as a story, I couldn’t actually put it in because it wouldn’t be believable. And I learned quickly that the nurses didn’t want to know about my own subjective pain scale. Once, I was honest. That got me a reaction of, and I quote, “Oh, is that all? Just a six?” The rest of the time I lied, which I don’t like doing, and adjusted my answer for what I thought they could relate to. “Oh, really? It’s mostly an eight, but spikes to a ten regularly? You poor thing, we’re going to get you some relief in just a minute.”
Now, before I actually share my own, subjective pain scale with you (yes, of course I’ve written it down), here’s a thought. It’s really easy to get into the ‘no, my pain is greater than yours’ pissing contest. And I don’t want that. I know perfectly well that there are others out there who deal with utterly debilitating chronic pain that’s a whole lot more chronic and a whole lot less successfully treatable than mine has been. You may be one of those people. The painful truth (hah! pun!) is that Western Medicine is actually not great at successfully treating chronic pain without either a) shockingly horrible side effects, or b) gruesomely invasive surgery, both of which seem kind of okay when put in perspective with the terrifying levels of pain involved.
So. This is my Pain Scale, as recorded in the front of my migraine journal.
0 – Absolutely No Pain.
1 – Moderate Pain. [Pain like… Stubbing a toe] Yes, generally you hop around swearing for about ninety seconds and then the pain subsides when you stub your toe. But what if it didn’t subside? And you were in a place where it was socially unacceptable to stagger around holding your head and chanting a choice litany of the f-bomb?
2 – Intense Pain. [Pain like… Cartilage piercing] I cried, when I got my daith piercing. Not just because it hurt, but because I was terrified it might trigger a migraine. Why get one then? For some people, a daith piercing relieves all migraines on that side of the head. For me? I got three days of relief and a jolly new piece of permanent jewelry.
3 – Severe Pain. I can still go into a meditative state (it’s not really compartmentalization as I still feel the pain, it just feels physically and emotionally like the pain is two feet over to my left and someone turned the volume down) and act relatively normal for short periods of time – ie, get through the meeting, get through the worship service, drive the car home – and then I pay as the pain spikes to a five or six when I stop meditating. Why stop meditating, you ask? Good question. I’ll work on that.
4 – Wracking Pain. Unsafe to operate heavy machinery.
5 – Unbelievable Pain. Unsafe to operate light machinery & appliances. Previous to January 2016, this was ’10’.
6 – Agony. [Pain like… Kidney stones. Or natural birth, apparently.]
7 – Desperate Agony. Mental blur. No ability to mentally focus.
8 – Torture. [Pain like… Tattoo removal on spine via laser.] For some unforeseen reason, all of the anesthetic they gave me for the tattoo removal… availed me nothing. They had to do it in ten second bursts because of the profound amount of pain, and this is insensitive little me talking. Happily, this was well before Jan 2016 and so it triggered no instant migraine. Still, when the laser stopped, the pain stopped, even if ten seconds felt like forever. The migraines that get this bad… go on for hours. And still seem like forever.
9 – Desperately Torturous. Suicidal ideation. Can still think thanks to hindbrain. Can stammer out words. (I do always manage to reason my way out of the consideration of suicide, and I do find the logic convincing – it’s not a terribly complex thought I have that reminds me of why not to kill myself, given the state I’m in, but it does refer to a complex logical argument I can make when my brain is not marinating in torturous agony – but by this point the thought of dying is so very literally attractive I do have to remind myself why living is a better choice in the long run.)
10 – Pure Hell. [Pain like… January 2016. The entire month, on and off, predominantly at 4 AM.] Cannot think. Cannot speak. Can only scream and cry.
Some people might imagine I use hyperbole or significant exaggeration (as is our cultural norm at this point) when I say ‘pure hell’, or ‘agonizing’, or ‘torturous’. Quite the contrary. I’m low-balling it because actually, words can’t describe how bad it gets… and that’s why, I’m sure, pissing contests ensue in moments like this.
This has been my historical experience: agony, particularly the last three years. Medication worked slightly, not always, not completely, and left me an intellectual mess with side effects. I had migraines every day. Imatrex, one of the most common medicines out there for migraines, comes nine to a bottle. Nine. For a month. (I actually laughed out loud when the neurologist told me that.) You can take up to three a day, if you have a really bad migraine. (I laughed again, but with more angst in the laugh.) But if you take more than nine in a month, including any injections you may have, you run the risk of heart attack. And I did lose track once, and take more than I should have. I didn’t have a heart attack, but I also didn’t sleep that night because my heart rate, which I was monitoring, just never slowed down. And then I ran a half-marathon the next morning. Don’t do that, by the way.
(In total honesty, I didn’t finish the half-marathon. I only ran the first 10 miles, which was still a win in my book, and I did spend 9 solid hours meditating, a personal best, and really, it’s the calmest I’ve ever been while running a road race. Still.)
And… how is Sare now?
I’m happy to say that the last time I had a migraine as high as ‘7’ it was the first week of the TruDenta treatment and I had gone off all of my medication and of course the treatment hadn’t really made a dent in the causes of my pain at that point. Needless to say, I still went back and availed myself of the infusion center my neurologist participates in and went back on medication just briefly. Since then I’ve had two bad migraines that have gone to ‘6’. And beyond that, the migraines with both head pain and secondary symptoms have been slowly and gently dismantled. They’re almost entirely gone. I’m in the process of doing some at-home physical therapy to restrengthen my shoulders in ways that wont trigger a migraine, and I’m much more careful about triggers in general, and about dealing with the pain when it’s tiny rather than waiting until it’s monstrous. I’ve changed my life so that it’s easier to live and be calm and happy, which means a massive change of priorities which I wish I could say I would have done anyway… but I probably wouldn’t have. And at the writing of this blog post series my life is almost… normal.
I have energy for the first time in my life. And I had to ask someone that I knew, ‘Is it always like this for you?’ And they said, ‘Is what like this?’ And I said, ‘This having energy thing. Where you aren’t so desperately tired that you always sort of feel like you need to lay down. Where you can’t bear to get up half the time when you’re seated because it’s just too much. Where you actually have energy in morning, afternoon, and evening to do the things you need and want to do, and even when bedtime comes around, it’s not a big deal to do more than just drag yourself through a shower and into bed.’ And they said, ‘Um, yeah, having energy to do stuff is pretty normal most of the time.’
Dude. Normal is awesome. I feel like some sort of superhero with this much energy.
This blogpost, The Historical Experience: Agony, is part three of Sare’s Adventures with TruDenta. Find part one, The Opening Gambit: Cynicism here, and part two, The Hidden Bias: Nondualism here. Stay tuned for part four – The Nuts & Bolts: A spa treatment.
For more information on TruDenta, you can check out their official site here, or wait for part four of this series, entitled The Nuts & Bolts: A spa treatment. If you’re in the WNY area and you would like to have a TruDenta assessment with Dr. Wood, you can find his website here, and his facebook page here. To make an appointment, call his office at (716) 882-0800.
Finally, has Sare been compensated in any way, shape, or form by anyone for this blog series? Nope.
[…] years ago I posted part four of this series. (Find parts One, Two, Three, and Four here.) And I just reread that post because it’s good sometimes to remind myself of […]