Homemade Sublingual Magnesium Spray and Topical Magnesium Oil

My sleep regimen includes some unusual homemade magnesium preparations, and I thought other people with myalgic encephalomyelitis might like to know how to make them.

Dr. Cheney was a big believer in magnesium – for energy production, for brain function, for sleep. He favored magnesium sulfate/taurine injections. He believed that absorption of magnesium from the GI tract was insufficient to benefit people with myalgic encephalomyelitis.

With a trial under his care, I found that injected and topical magnesium sulfate both caused tachycardia in me. As a substitute, he suggested I try other forms of magnesium, focusing on sublingual and topical approaches.

My regimen includes a commercially prepared magnesium threonate that I use sublingually, and three homemade magnesium preparations: a sublingual magnesium gluconate spray and magnesium gluconate and chloride “oils.”

I know the amount of magnesium I absorb sublingually and topically is probably slight, but I have found that it’s enough to help shift me back to sleep when nighttime awakenings occur.

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Dr. Cheney’s Change of Heart: Low-Dose Nocturnal Oxygen in Myalgic Encephalomyelitis

This post is based on years of recordings/notes from my visits with Dr. Cheney and his public talks. I’ve done the best I can to present this clearly and simply, but as he’s no longer here for me to run this by, please know this is merely my understanding of these issues as a layperson. Any changes in your regimen should be made with the supervision of your health care provider(s). A language note: While I prefer ME, Dr. Cheney used CFS or CFIDS, and in order to be clear about how he presented information, I’m going to use that everywhere applicable here.

My little pal, puffing away in a corner of the kitchen.

In 2017, Dr. Cheney revised his thinking about the use of oxygen in CFS and began recommending low-dose nocturnal use of it to his patients. If you’ve been around the ME community for a while, it’s likely you’ve at least heard of what he termed “oxygen toxicity.” I don’t believe any Cheney patient has written publicly about the shift, and I thought someone should. Going from “oxygen toxicity” to recommending oxygen sounds like a complete turnaround, but was really only a partial one.

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The Power of Pyridostigmine

There’s good news herein about a new med, but I’m going to do a little rationalizing first of why I’d never tried it.

People with ME will understand why I didn’t try to switch practitioners while Dr. Cheney was alive. We all know there’s no cure; we all know the absolute most we can hope for is maybe to improve some symptoms, some of the time, and a lot of the time not even that’s possible. For those of us fortunate enough to be able to access specialists, it’s a gigantic undertaking to switch, and when do we ever have the energy to spare for a gigantic undertaking?

Plus Cheney had saved my bacon more than once.

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A Problem I Didn’t Want Back

CW: Diet culture BS, weight loss/gain, dieting talk. 

The current state of the case in apparel from five decades. Those boots have no zipper and I don’t don them on spec.

A few weeks ago, a new doctor asked, “So has your weight always been pretty stable?” I stammered something out, but when Chimp and I were back at home, I said, “That question about my weight? We would have been there all day.”

I’ll attempt to be brief.

One million years ago, I wrote an entry about the unexplained weight loss when I fell ill, which landed me at 118. The least I’d ever weighed at my adult height, pre-illness, was 117, and that required an unhealthy degree of food restriction and running twenty-five miles a week. My casual exercise set point had been around 133-138, and serious exercise would keep me at 128, so 118 was a big change.

When the tiny-waist-big-booty combination started to get a lot more popular in the years after I got sick, I felt rather bitter about it. I’d endured having it at a time that PAWGs [potentially NSFW] were not at all esteemed, and now I didn’t get to reap any of the vain rewards, like readily available curvy-cut pants.

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Vax Attack

Last summer, we learned from Chimp’s institution that he was going to be expected to teach in person during the fall semester, possibly-immunologically-vulnerable-spouse be damned. The good things about it, at least, were these:

  • He’s on the fourth floor of a building that has no elevator, only a particularly long and decidedly sadistic 19th-century staircase, so nobody goes up there unless they really completely absolutely must, and even some of the musts take a regular pass 
  • It’s the oldest building on campus, with gigantic operable windows
  • He was scheduled to be on sabbatical this spring

…so all we had to do was get him safely through the fall and we’d be able to go back to our complete isolation for the next eight months. 

We decided we would physically isolate from each other during the semester, which we knew would be lonely and very unfun, but even with mandatory vaccinations on campus, we had no idea what the case rate was going to look like once the students were back in person and didn’t want to chance it. 

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That Silver-Haired Daddy of Mine

My dad died suddenly last summer, five days before my birthday. 

I received a lot of kind expressions of sympathy, and to some people who remarked on the suddenness of his death, I said, “It’s okay; I’ve really been getting ready for it nearly my entire life.” It was long real to me in a way one’s father’s death isn’t for most people.

In 1978, when I was three years old, the day my mom learned she was pregnant with my brother, my father was diagnosed with stage 4B Hodgkin’s. They said they’d treat him, but they wouldn’t give him odds; the odds were too bad. He had two further occurrences and endured a total of twenty-one rounds of MOPP chemo before going into remission for good in 1982. 

When I set the table back then, with the practicality of a child who has known nothing but a difficult situation, I gave him the brown placemat because he threw up a lot. When I got the (infrequent) chance to choose candy, I picked Good & Plenty so I could pretend I was taking pills, like Daddy. 

When he was first diagnosed with Hodgkin’s, he had a hospital roommate, another young father with the same diagnosis, same stage, with three children. That man died within a few months. I have thought of those kids countless times over the course of my life, always aware that they were out there in the world having a very different experience than my brother and I were, and hoping they were okay.

My dad’s hair was completely silver by his early 40s. I don’t actually know it was the years of stress the cancer had caused but it’s always seemed plausible. 

Sometime after his last bout, when I was still a child, I asked him if he would die someday. 

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Cruel (Cruel) Summer

“Summer Sunshine” by **Mary**

I’m usually on edge Memorial Day weekend. That’s when I fell ill in 2004; ever since it has felt snakebit. Most years that’s just my anxiety. In 2021, the last moment that everything was relatively normal was the evening of Memorial Day.

I was supposed to have my semi-annual appointment with Dr. Cheney on June 2nd at 2:30.

I sent his assistant a message on May 31st about a medication shortage, and that person replied that Dr. Cheney was out of the office for the coming week. That was surprising, given my scheduled appointment, so I asked about that, and his assistant replied that the appointment would not be taking place and said we could reschedule the next week, when he was back.

A change like that was unlike Dr. Cheney, and it made me uneasy.

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Therapy, Redux

Crimson Rose butterfly by J.M. Garg;
Licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license.

A year ago today, I went back to therapy; the last time I’d been in therapy in a sustained way was 1996 to 1998.

Early in 2020, I heard about the upcoming publication of a book I thought might be up my alley. I generally slap anything that piques my curiosity right up on Goodreads, but not this time.

There were two reasons: 1. Given my history, I thought reading it might be either terrifically enjoyable or an abjectly terrible idea, and 2. A significant proportion of my Goodreads friends are those of such an era that they’re aware of that history, and while I didn’t expect anyone would be so bold as to archly comment “Joc, how utterly predictable of you,” I felt uncomfortable enough with the idea of privately arched eyebrows that I held off. I told myself I’d come back to the book when there were reviews and I could better assess the potential impact – whether it was fun but trashy and unrealistic or deadly serious and a possible personal millstone. 

Then, around the book’s publication date, everyone’s collective attention got massively distracted – I know it’s hard to remember now what happened in early March of 2020, as it was handled so well and efficiently that it sank from view almost immediately – but I got distracted too, and forgot about the book for some months. 

By the time it popped up on my radar again toward the end of the year, it had achieved a lot of positive notice, and I decided to go ahead.

Reader, this book fucked me up

From the dedication forward, it was electric as a whispered confidence.

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Myalgic Encephalomyelitis and COVID-19: Can I Be Vaccinated?

Content warning: TMI, mental health.

Several friends have asked me whether I can be vaccinated and I’ve answered them individually. I’ve even written about it a couple times and stopped short of hitting the post button because the potential for comments on the topic has felt too stressful. But I’ve gotten the query enough times now that I guess I should put this out more widely.

When I became Dr. Cheney’s patient in 2009 and he learned that my descent into ME had been triggered by my first-ever flu shot, he told me that I should not be vaccinated again unless it could not be avoided.

I’m still undecided about whether this can be avoided.

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Rattle & …umm

That awful moment where you lift the new bottle, and the sound of the tablets shifting says “this is the wrong brand.”

The manufacturer discontinued the formulation of metoprolol ER I’ve taken for years, and I found that the first replacement brand I tried, the one my local pharmacy usually stocks, didn’t agree with me. 

The last time I talked to them about it, they’d ordered a second for me to try, and I think where we’d left it was that I was going to call back if it didn’t work so I could try the one other formulation available. The second one did work, and because they gave me that one three months running, I wrongly presumed that they’d continue. Because of course there’s more than one person there, I should have called back to confirm and set that one in stone. That was my mistake, not theirs.

I don’t know if it’s against the law everywhere – I can certainly imagine why it would be – but in the U.S. state where I live, it’s against the law for pharmacies to take a bottle of pills back when this happens. You have to check and catch it *before* they turn it over to whoever is picking it up. And if you don’t and you want it replaced, you have to pay out of pocket to replace it if you want it before the date your insurance will pay for another refill.

I called them and asked them to please order a bottle of “second formulation” to replace it with and to mark in my script for it to fill it with that brand going forward. The tech said “Uh, there are no more characters left in this little box,” the one where they’ve noted all my other brand specifications. She had to find another spot in the record where it’d fit. 

I don’t know if I still do, but for a long time I had My Very Own Shelf at the pharmacy for this reason, and if it’s still there, Second Formulation will get to slide in with all the others and say, “You too?” 

Anyway, write today off, between the stress of fixing this on the phone and my body’s unhappiness with being thrown off balance. 

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