Messages in a Bottle #13: Placebo Effects

lol - so true of periodic paralysis I Could Use A Standing Ovation, Could You? The Journey of An Anxious Girl: that's a pain in my ass
<Image Text>: Doctor says to patient, “You have an extremely rare, hard-to-treat disease. Are you trying to make me look bad?”

I bought pink Himalayan salt pills today instead of my usual generic salt capsales. I know some people think the “highest amount of trace minerals of any salt” are independently useful, but my default assumption is still that salt is salt. I have a scientific image to maintain at all costs, after all. My conception of myself as intelligent largely depends upon carefully managing my own treatment in line with medical guidelines gleaned from published peer-reviewed sources with a preponderance of evidence, etc. etc. etc.

I’ve been called stupid plenty of times in my pre-ADHD-diagnosis days, so even though I have an excellent track record of identifying what is going on with me and my sibling – even when the medical establishment itself is befuddled – I have only ever learned to (mostly) trust myself because I can always cite my sources. It isn’t just me claiming something is true, it’s “the literature.” The bully-in-my-brain is far harsher than any true academic peer review I’ve ever received. I can’t point to a pile of studies that suggest that one type of salt is better for dysautonomia regulation than another, so thus it isn’t. It could be the greatest thing, since, well, normal salt, and I would remain a skeptic until there’s been at least one meta-analysis.

I’m not buying the pink stuff because I think it will work better; I’m buying the pink stuff because I’m hoping it will taste better. I have heard from numerous qualitative narrative sources with “lived experience” (aka Facebook groups) that it tastes better, or, at least, that it comes with a better pill coating that makes it taste less like anything. Even after two years of taking salt pills, I still gag a little three times daily when I take my prescribed grams of salt daily for dysautonomia. I know there are white salt pills out there that are so well-designed that they truly do taste like nothing. In a world where science can design “burpless” non-odorous fish oil tablets, simply masking the taste of pure salt isn’t an intractable user-design challenge. But, those resulting fancy “sports performance” salt pills are almost twice the cost of simple salt pills. Since I take half a dozen of them daily, that cost differential adds up.
Today, though, Amazon had a sale that reduced the cost of pink salt pills with an external pill coating to the same as the uncoated white salt pills that I normally buy. I jumped on it. Even for a month, it would be nice not to have to choke down the taste of pure salt in the morning. (If you don’t have dysautonomia, grab your salt shaker and shake it into your mouth immediately upon waking up. That should give you a sense of why taking my morning uncoated pure salt pills remains so unappealing even years later!)

I readily admit that this sale could set a dangerous precendent as – after a month of potentially not gagging a little three times daily – I might not have the willpower to return to the cheaper stuff. I still suspect that even if I do end up shelling out more regularly for pink Himalayan salt tabs, it will still be because of my taste preference, not because some salt is better than other salt. I have that self image to maintain, after all.

I could be wrong though. I have an excellent track record of identifying my own symptoms once they rise to the level of being so intrusive I can’t ignore them anymore. I can be fairly oblivious to sub-threshold issues. This morning’s purchase reminded me of one of those times when I convinced myself I was falling for the placebo effect, but I had accidentally stumbled onto a real medical issue that benefitted me to treat but would probably never have risen to the surface if not for my own ADHD inattentiveness.

This week’s Message in a Bottle is the story of how I accidentally empirically detemined that I was deficient in zinc simply because I failed to plan ahead. I wrote up the experience in a post that I originally intended for my nascent blog in 2017, but by the time I actually got the zinc test that confirmed I was deficient, I had forgotten about it. Any memory that I had ever written that post remained lost to the far corners of my brain – though I do take zinc and get my levels checked every six months – until this morning. It’s a bit of a mistake to claim that there is no filing system within the ADHD brain. If there wasn’t, I’d never have been able to retrieve the memory in response to any reminder at all. It’s more like…there’s a poorly designed filing system based on quixotic semantic associations that change every few months.

I couldn’t retrieve the appropriate filing index for “I once wrote a blog post about wondering if I had zinc deficiency” when I was tested for zinc deficiency. That would be too simple. I could retrieve that post after buying pink Himalayan salt pills this morning because the index was actually tied to the semantic category of “all the things in the world that might cause placebo effects.”

Also, for anyone wondering, yes, there have been a few published studies suggesting that zinc can mitigate some ADHD symptoms in those with measurable deficiencies. But, its effectiveness seems to be limited to symptoms of hyperactivity and impulsiveness. Thus, zinc itself is probably not ever going to help me remember whether or not I have written any posts about zinc deficiences. However, paradoxically, having my rather “unique” mental filing system and network of semantic associations has actually been one of the most beneficial aspects of having ADHD for me as a scientist. While everyone else is thinking “B” when “A” is mentioned, I’m usually the one activating “X, Y, Z” and going “but, umm, what if it was actually this…” (Also the one going “I need to zinc think about this for a moment” because once I realize what they might be missing, I also realize what I might be missing, too!)

10/27/17

I take a lot of vitamins. All of them are doctor prescribed. NaCl (aka salt) which is actually a mineral, keeps me upright and stable in my blood pressure. Fe (iron – also a mineral) prevents a return to either traditional or non-traditional anemia, and Mg (magnesium, still a mineral) helps with migraines. So, ok, scratch that. I take a lot of minerals…
No, wait, I also take vitamin D and a B-vitamin complex for deficiencies. I guess I’ll just leave it at “I take a lot of supplements,” period.
But, my point that all of these are doctor-prescribed stands. That’s important to me. I’m terrified of being viewed as an attention-seeker or as exaggerating my issues to medical personnel. I’m terrified of ever being told “it’s all in your head” as a major PTSD trigger for me, given my own history. So, I go to almost obnoxious lengths to ensure that whatever I’m asking about isn’t all in my head. I come in with so many cited sources that I suspect I actually further reinforce medical stigma about those who “do their own research” because no one ever said PTSD was logical. Case in point:

Over a month ago, I needed to buy more doctor-prescribed magnesium in a hurry because ADHD and my own failure to plan ahead to order online caught up to me. The local pharmacy didn’t sell pure magnesium supplements. (Or perhaps it did, and I was just too brain fogged from my lack of it to be able to find it!) They only sold it in a compound supplement with additional calcium and zinc. A quick phone search suggested that the amount of extra zinc I’d be ingesting wasn’t likely to lead to zinc poisoning even if my personal levels were normal, and, though I’ve been warned that calcium can inhibit iron absorption, I estimated that even with the supplement the net ratio of calcium to iron shouldn’t tilt the wrong way. Admittedly, these searches weren’t fully up to scientific standards, but I just wanted to go home and I was more looking to talk myself into buying what was available and being done than to talk myself out of it.

I took the combined pill until I ran out, and I ordered my usual on Amazon well before I needed it to avoid a future repeat experience. I wouldn’t have said I noticed anything particularly different about my overall health last month, but this month I’ve had markedly less energy, more mental fogginess and more general anxiousness. I’m not in a flare that I can tell. I’m not always great at identifying them, but my blood pressure is stable, I’m not turning purple from Raynaud’s or showing any of the other more obvious signs. But, the timing of my increased fatigue does line up with stopping the combo pill.

The Internet and patient groups for everything from ADHD to dysautonomia are a little obsessed with zinc as doing…something, somewhere…to improve all of the above. There seem to be some scientific studies, but most suggest that zinc supplements only improve symptoms in my diagnoses if a patient has a true measurable deficiency to begin with. No doctor has ever suspected a zinc deficiency for me.

But, then again, no doctor has ever suspected much of any of my very real diagnoses, either. I wouldn’t even have diagnoses of ADHD or dysautonomia to wonder about the effects of zinc upon if I hadn’t fought hard for appropriate testing when doctors were more than willing to chalk it up to stigma and the simplest answer. I had one proactive doctor in another state who initially recognized those other mineral/vitamin deficiencies, but each time I have had to switch doctors since I have faced skepticism that I could possibly still be deficient in those same vitamins and minerals. I have learned to stop supplements long enough in advance of my first appointment with any new doctor to return to my own baseline, be “rediganosed” and then eventually establish the truth.

After the new doctors believe me, they inevitably shrug their shoulders and go, “Well, taking supplements keeps you stable. Not taking them returns you to deficient. Just keeping taking iron, vitamin D and all the rest forever.” They have never offered a less disgusting solution. That first doctor – and all the subsequent ones – have been content to make me swallow down iron pills daily that (alongside the salt pills) make me noticably nauseous after each ingestion. I have read enough stories by now of other spoonies with my same chronically low ferritin levels receiving infusions of iron quarterly, avoiding all side effects and never having to suffer through supplements that I wonder sometimes how truly “well-managed” I am in the supplement arena, but I always get told “the pills work, so deal with it.” I hesitate to ask about whether I might also have a zinc deficiency.

I fear being viewed as someone who demands additional pills just because they “seem to help.” It feels very unscientific. I feel like I need to run a double-blind study to determine with rigor whether the lack of last month’s additive zinc and/or calcium are contributing to my current malaise. I shouldn’t even be able to run a double-blind experiment – given that I’d be both patient and PI – but, my ADHD gift of forgetting to buy pills or what pills I am taking means I’m sure I could eventually set it up to where I didn’t remember (but had written down) which pill type I was taking each week to plot against my washout period (aka the period when I’m taking nothing because I forgot to order a refill) and the true alternative. I suspect I could empirically determine if zinc actually helped me.

I could also just ask to have my zinc levels tested before I buy my next pill bottle. This probably seems so much easier to anyone who doesn’t fundamentally fear the medical establishment because of the legacy of C-PTSD. This probably would be so much easier, except that I feel like I already somehow “spent” all my political capital with doctors in the process of getting my dysautonomia diagnosis, even though the tests were positive and thus, in theory, my esteem should have risen with my correct determination. Being “pushy” about medical tests is scary and complicated and could backfire. I was confident enough of how the tilt table test would turn out. (Fainting is prettty noticable, and blood pressure can be measured at home much more accurately than subjective wellness.) Yet, I’ll set up my wonky attempts at a double-blind test to provide me with the confidence to maybe, possibly, ask for a zinc test at some ill-defined “future” point.

Because all of my cumbersome tracking is still less scary than just asking outright and potentially being accused of being attention-seeking or being stupid because I got sucked into the placebo effect, or telling myself those same things if I keep buying the combo supplement without mentioning it to my doctor. Nevermind that placebo effects are statistically significant, so even if I am falling for them, that doesn’t necessarily mean any perceived increase in energy and mental clarity aren’t also simultaneously real.

Placebo effect or not, though, wouldn’t it be nice if we had the kind of medical system wherein it felt safe for spoonies to just request additional tests as needed to determine whether they might have additional issues, rather than jump through all the mental, insurance and stigma hoops first?

Need a recap of anything I’m talking about in any post? Check out my Glossary of Terms.

Advertisements

5 thoughts on “Messages in a Bottle #13: Placebo Effects

  1. Funny you say that salt is salt. My cardiologist said the same thing. But here’s the thing, the pink stuff makes me feel better than the white. Or rather when I’m out of it I feel generally worse. I don’t take salt pills, it’s never been suggested. Was just told to eat more salt. Hoping the pink stuff helps you!

    Liked by 1 person

  2. Totally agree! Requesting simple medical tests shouldn’t be the ordeal that it has become. It feels like I end up getting fresh PTSD with every new test and visit.
    Since I also use a lot of salt, I now switch back and forth between them all, Smoked salt, Hawaiian lava salt, Redmond, Himalayan, Celtic, Kosher flakes, and regular iodized (otherwise I would worry about not having enough iodine–and at this point I’m ‘done’ asking for additional tests at doctor appointments!!) For me, flavor and taste eventually won out over my desire to do no more harm to my body than had already been done to it by trauma beyond my ability to control, lies, and the medical establishment. Sigh.
    Regarding the placebo effect, I think it was Dr. Sarno (or maybe a different ‘expert’) who said the placebo effect of any given treatment wears off in a set amount of time (I think it was within 3-6 months). Therefore, given enough time, one should be able to determine if a course of treatment truly worked, or was merely a placebo effect. I’d have to research that again though for accuracy–not sure MY brain fog is getting that information right!!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s