The Last Puzzle Piece To This Long-ass Health Journey, Finally

Hey peeps. Good news that may not sound so good atm, but I promise, it’s good news. We’ve finally found the issue, and I’m pretty sure once it’s corrected, shit will be as it should be again. Short and sweet: it’s magnesium deficiency. It’s been going on for a while — at least since spring, possibly since December 2023 — but because of the nature of how blood is tested to find magnesium deficiency, and blood is the last place for said deficiency to reveal itself (something about leaching magnesium from the bones to correct the low magnesium), one has to be at the worst of the deficiency for it to be caught. But now we know what it is, and yeah, with proper treatment, it’s going to get better.

I had a long ass thing drafted up, going into specifics and such, but I’m just too tired to edit, or read, or even post this. But I wanted to share because it is really good news. I got some labs on the aldosterone levels too, and although on the low side of things, supplementing sodium has seemed to keep the potassium/sodium balance in a good place for the moment, which is what matters most. If the secondary adrenal insufficiency goes full primary, it’s a simple pill to treat, so I’m not that worried. And for all I know, the adrenals will improve when the magnesium increases. It takes about 6 months of treatment to restore magnesium deficiency. I don’t know how long the exhaustion is going to last through the next 6 months, but for now, given I’m only 4 days into treatment and feel so much worse than when I got the results, I’m not holding expectations of anything atm. Just getting through.

A lot of sensory feedback has returned to my system, things I didn’t notice were gone. I apparently hate food right now, or at least the taste of it makes me want to puke most hours, making all of this so much harder to repair. I’m using a three pronged approach of magnesium citrate in liquid form as a once a day supplement, magnesium chloride (aka magnesium oil) for transdermal absorption twice a day, and mineral drops added to my beverages of choice. One of those things is going to get around the absolute nausea that has reared the moment I started supplementing and my stomach could be felt for the first time in months. I can feel the cold floor through my feet now, can feel hot water again, can feel how tired I am. Sure, I’ve been slow and aware of it, have had no stamina, no motivation, hunched over like gravity is too much, but it wasn’t until getting some magnesium in that I can feel the overwhelming weight of exhaustion hanging off my every limb, pulling me down. But at the same time, sleep is near impossible. The exhaustion is so bad I’ve finally been able to convince myself not to fight it, to just nap and let the magnesium absorb, etc, but my body has no idea how to switch into sleep. I might have to start taking melatonin during the day just to help it rest as it needs.

Uh, so this looks like the last thing. Because of how essential magnesium is for the body, and that this has been going on long enough to drop my calcium levels with it, there’s a lot of systems that have been under-functioning. Aka, why everything was breaking when the mast cells were finally calmed, making no sense until framed in the context of a deficiency. If I’m lucky (not holding my breath) I may see some things automatically correct that looked like permanent issues. Who knows, maybe the pituitary will… raval? Rally? Rally, yeah, and it’ll remember how to make ACTH/TSH. Not depending on it, but why not be open to a positive potential, right? I should at least stop being chronically fatigued and so dumb brained (totally a medical term) once levels are optimal, and yeah, we’ll see who I am then and what needs prioritizing once I reach that goal.

I would show you the little pumpkin sculpt I’m working on, or a finished painting, or cute cat photos of the kittens, but I’m too tired to upload and deal with formatting. I’m skipping Halloween this year. Thought I could do it — it’s my absolute fav — but getting the magnesium raised has me feeling all the muscle cramps, exhaustion, and fuzzy brains that I can handle atm. But I wanted to check in, let you all know I’m still alive and going to be fine, and when I get back to being more myself, I’ll bore you all with the details — such as if you only drink filtered water, you’re demineralizing your main natural source of magnesium. <— Don’t do this. It adds up quick especially if you're reactive to everything but water.

Hope you all are well, and if not, hope you’re feeling defiantly alive. Peace, peeps. >^.^<

Okay, ALSO chronic fatigue

So… it’s still chronic fatigue. It just looks like it knocked out my adrenals for a few days. So, yeah. Still this bs puzzle to solve.

I wanted this to be the end. MCAS should be bad enough, yeah? Adrenal insufficiency bad enough. Hashimotos, dystonia, brain fog, ADHD executive dysfunction, blah, blah, blah. I keep coming back to the vagus nerve. It turned my adrenals back on today. Vagus nerve stimulation to both tragus of the ear for 1/2 hour. Knocked me out, and when I woke up I was shaking from adrenaline rushing through me as the adrenals did their thing, brought my blood pressure back up, turned on all the systems like a reboot to an organic computer.

I’ve been experimenting with vagus nerve stimulation for years since I was living out of my car with screaming face pain and chemical sensitivity (which turned out to be MCAS). It was the only thing that allowed me to get back in the house. I thought it was focused on the immune system because of all the allergies and MCAS. I thought the dystonia was part of the immune system problem because of how it showed up when I was knocked out by allergies. But those adrenals are connected to the vagus nerve — all organs are. The immune system, the digestive system, olfactory — the whole sensory issue thing with skin numbing, lack of temperature sensory data. It’s all connected to the vagus nerve.

I actually stopped vagus nerve stimulation some months back because I was only noticing how it made me tired and seemed to knock out things that were currently working. I found it counterproductive, especially when the MCAS was raging. Now… now I just see it pointing to the problem.

There are chronic fatigue specialists out there. A whole crew in the hospital in Boston my dad used to work at. I just don’t know if I can survive the stress of trips to Boston, never mind be able to get in with such a program. But I think I need to do something, soon. If there’s a deadline on my adrenals, where without constant stimulation they can fail permanently, I want to get this figured out before my secondary adrenal insufficiency can become primary. The MCAS raging in my system was ensuring adrenaline was flooding me. Treating the MCAS has stopped the adrenaline. It might be why my adrenals are fluctuating now without anything to remind them to wake up.

It’s all theory. I’m not a doctor or scientist, just a very exhausted patient 11 years into this mystery keeping me from living my life. But chronic fatigue isn’t just the label they slap on patients too stubborn to get better anymore. It’s an actual specialty with research and new answers. And the vagus nerve seems to be in the middle of a lot of that research.

There’s that bastard, hope, still clinging on by the fingernails, no matter how bad this goes, how depressing each dead end leads. Shouldn’t treating all those other problems be enough? Nothing feels like enough…

Another Adrenal Crisis

Hey peeps, thought I’d check in and let you know how I’m doing. Things were in a weird place for some months. I was getting treatment for the MCAS, some amazing meds that I absolutely noticed were working. And there came a point where I felt it — the MCAS switched off. It wasn’t in the background running 24-7. It was under control, quiet. And I was thinking fine, okay, it’s a forever illness, it’s going to flare off and on and that will suck, but everything else should be fine, right? But it wasn’t. I was just so damn tired all the time. The chronic fatigue had gotten worse without the constant battle happening in my body from the mast cells. It didn’t make sense.

So I asked for a higher dose of the ADHD meds, hoping that the stim would deal with the chronic fatigue. And it did, for the most part, except for the hours each day the chronic fatigue would win, sometimes entire days gone to being exhausted. My working memory was failing again, and I was thinking of putting up another executive functioning board because thinking and staying focused were getting so difficult again. Got my thyroid checked — my numbers had slipped and I was hypothyroid again, so we upped my thyroid dose. Again, expecting energy, return of that working memory, but no. Tried progesterone — my hormones were all low. Maybe it was something in there. Progesterone made me want to sleep all the damn time, even as it was clearly helping other things, like my mood.

Nothing was making sense, and I was between doctor appointments, just trying to figure out why I was getting tireder and tireder. Everything I was doing was supposed to help with energy. I was getting plenty of sleep, taking the right supplements and meds, my labs were where they’re supposed to be, so why was I still dragging? Was this just what happens after being sick 11 years and now “healthy” in an older body? I’m not that old, but supposedly hypermobility can lead to chronic fatigue just naturally, no known treatment of the moment. But I had been so much better just half a year ago…

Then I had a day that sparked a memory and set me on the right path.

Friday, after a good 9 hours of sleep, I got up and went into my little studio/office to work on the computer. The day before, I had spent the day standing at the desk, but Friday I needed to sit. I was exhausted. Everything was demanding I go back to bed, but I refused to lose an entire day, so I pushed on. And at some point, while staring at the computer, wondering why everything I was doing was so damn slow, I noticed that my eyesight was dim, and darkness was crowding the edges of my vision, as if I were moments from fainting. Checked my blood pressure — I was creeping into pre-hypertension instead of my usual normal to low, and my pulse was flying. Weird, but that could all be from the ADHD meds. Checked my blood glucose: even 80. Perfectly fine, except for a complete absence of hunger that felt odd. No MCAS symptoms, no allergies, no reason for the response. I was taking all my meds as I should, including my life saving cortisol.

Hours after that, making myself stand because it seemed to help clear the darkness from my vision a bit, I found myself moments from bursting into tears, bizarrely emotional, completely broken down and I couldn’t figure out why. My brain kept telling me that this couldn’t be normal. It didn’t matter that I was on all the right meds, that I was 11 years older, etc: something was wrong and it wasn’t aging or “chronic fatigue”. Something was seriously wrong.

Eventually, cuz my brain was wrecked by this point, I remembered the last time my vision got like that beyond random dizzy spells when standing. It was when my adrenals failed the first time, a few years into the illness, during treatment for Lyme disease. It hadn’t been a secondary, pituitary knocking out only the cortisol problem that first time. It had been a full blown failure of my adrenals, and with the loss of cortisol production, I had also lost aldosterone production. Something that wasn’t noticed until the day after I was prescribed hydrocortisone, leaving me rushing at a crawl, hugging a wall to stay on my feet, my vision dark and tunneling, to get to the pharmacy before they closed because I was losing all the liquid in my body faster than I could put it in.

It had been terrifying that first time, something in my system very much aware that I was going to die — quickly— without intervention. And that never happened again. Any other time I’ve found myself in an adrenal crisis, it was only ever low cortisol.

Aldosterone keeps the electrolytes balanced in the body, specifically sodium and potassium. Lately I’ve been craving salt, unsure why my intake was changing since I wasn’t active, wasn’t going out in the heat, etc. But after years of this yo-yo-ing, being fine than feeling near death, I wasn’t paying attention. Partially because my brain had been feeling like a sieve, unable to hold thoughts again. I couldn’t write again, my mood kept fluctuating, and I was so damn tired. Everything felt hopeless as I hit this wall that didn’t belong there. A part of me very well knew that there was a level of health I could clearly remember that I was reaching toward. It was absolutely in my grasp — I should be functioning, everything was addressed! — yet something else was wrong.

So after realizing that this was very much adrenal, even if I was getting enough cortisol, I made myself eat some potassium full fruit and doused all my water with salt, including pouring salt into my hand and eating it raw. Hunger returned enough to eat properly soon after, and I ate some wonderfully preservative-laced foods that increased my sodium swiftly. The next day, certain that I had found the problem (but also the weekend and unwilling to go to the ER if avoidable), I asked my partner to take me to get some licorice candy — the real stuff — while I wait for my online order of licorice root powder to get to me.

I got better. Felt sick first — still feel kinda sick, the next day after adding the licorice — as everything started shifting, changing. All these basic functions turned back on, my body suddenly producing saliva again, sounds and scents roaring back into the world at full blast, able to feel my skin, how dry it is, the temperature in the air, my fingers and toes. The constant lower back pain disappeared, even as I was jumping at noises, my startle reflex returned after too many months to count. That reflex felt like something knocking on my nervous system, an internal jolt of energy that demanded everything wake up, start working!

Last summer, my endo said that I had hit the one year mark of treatment, and would only need to be seen once a year for upkeep. She warned me my adrenals might fail, even though I only had secondary adrenal insufficiency, but it had seemed so unlikely. Apparently not so much.

So yeah, I’m back in the recovery stage of things as my body remembers how to do basic things all over again (again), but I suspect things should go faster this time around with everything else basically treated. *knock on wood* I should get some electrolyte drinks… There’s a proper med they might try to put me on (Fludrocortisone), but I remember the half life being too short, with long gaps of fluctuating aldosterone levels, and preferring licorice root over it in the long run. There’s also adrenal cortef, that I’m going to be considering again to supply the other hormones my body is underproducing… I was on all this stuff back when this illness was new to me. At some point the poverty and the years of screaming face pain and unchecked MCAS and untreated adrenal insufficiency just broke me and I forgot so much.

I had thought it had been a poor prescription of licorice root the first time my adrenals failed. Adrenal failure is so rare, but if you have too much licorice, you can literally knock your adrenals out, the same way if you have too much prednisone or hydrocortisone. The body becomes dependent and, once removed, it fails. It’s because licorice contains glycyrrhiza, and although how it exactly works is still in question, it seems to supplement aldosterone and cortisol in those who are either still producing or supplementing cortisol. This is why most licorice candy is flavored with anise oil: over eat it and it’s deadly. I had been prescribed licorice root back then because it was clear something was wrong with my adrenals, but because of the poor communication with my doctor at the time (who ended up out of the practice shortly after), I stopped taking it because I couldn’t afford all the supplements they were prescribing. Stopping led to an adrenal crisis… but the problem was, I hadn’t been taking enough licorice to cause it, and poor communication from a slew of temp doctors after (and a dangerously useless PCP) led to me to assume for years that I was dealing with the mythological adrenal fatigue instead of being one of the rare people who has adrenal insufficiency.

And that’s still hard to get my head around as I get older and learn all the “rare” things I have that are my normal. I went through life assuming my every talent and limit are comparable to everyone else, and then, when learning of my disability, assumed, okay, my limits are worse. They’re why I’m struggling so much and shit just seems so easy for everybody else. But even when struggling, I can do things with ease others would take years to learn, and I keep collecting all these rare illnesses, so I guess rare is a spectrum in multiple directions with this body of mine.

I’m hoping my talents can win for a bit going forward. The last 4 years have felt all about the limits, to be real. I don’t know how many times I’m supposed to get wiped out by something and still expect to get back up and walk it off. This has been a damn long journey, and I still feel like I’m waiting to be allowed to start living my life instead of dealing with all this health bullshit. I don’t even want to claim that this is the last thing and I’m going to be fine, because seriously, I have been wrong so many times now. Why would something like the adrenals and thyroid, two supposedly perfectly treated now, both divebomb the last few months? I don’t even know if having expectations and hope aren’t just a form of trauma and self ableism at this point because it all gets crushed so quickly by reality being completely unreasonable. But that could just be the low adrenals talking atm, and tomorrow — next week/a month/how ever long it takes — will be me back to my cheerful, healthy self. Guess it’s another a wait and see thing.



New MCAS Meds!

Hey, peeps, just wanted to check in and give a mini life update and, you know, intentions of how it’s going to fit into writing in the future.

One of my docs started me out on a med called cromolyn sodium because of persistent GI issues. We had figured out I have hypermobility a month or so ago, which as a lifelong, genetic thing, was likely the source of a lot of GI issues, especially the super slow gut motility. I was on about it because it seems to be tightly linked to the return of the chronic fatigue that’s been taking over my life since the start of 2024. Between trying to balance the two issues, this new med was added in, introduced to me a bit like an H2 antihistamine that would help my gut. It is so much more than an antihistamine (because, for one, it’s not an antihistamine at all). It’s a mast cell stabilizer.

I’d been put on a natural mast cell stabilizer (Quercetin) to see how it would go, along with a ton of antihistamines for H1 and H2, but nothing really toted for MCAS. Partially because of the big question of if insurance will cover it. For whatever reason, it’s pricey business to treat MCAS, even though I don’t believe any of the treatments are particularly new (but I don’t want to get into the dystopia of the US health insurance situation). Insurance is currently paying for this dose at 3 times a day (4 times would be ideal, tho). Things were getting increasingly better the last months since adding in the quercetin and trying some remedies (but not cures) to the whole gut motility issues. But starting this sodium cromolyn stuff… It’s beyond any expectations I’ve had, and I’m really still coming to terms with the changes considering it’s only been a handful of days.

My stomach is no longer this background distress of boiling — something that has been with me for so long, I only noticed it was happening when the med soothed it away. I’m no longer full of extreme anxiety, another background issue that is so hard to quantify after so long. I mean, I was diagnosed with generalized anxiety back when I was diagnosed with PTSD in my late 20’s, and those were conditions with symptoms I first remember noticing in early tweens. Anxiety is a part of my base wiring at this point, and to have it suddenly stop has been, well, life altering. My mind is so silent. There isn’t a constant monologue or song or chaos of internal noise (which I now realize must have been chemicals being sent out from chronically degranulating mast cells). It is such a deep peace, that after so much noise it almost feels spiritual. Like fresh, cooling snow engulfing a brain on fire for years.

I can focus, for the most part, because my brain is so still. I can focus on a screen — and my eyes seem to be doing okay with screenwork, at the moment. My executive functions aren’t at 100% atm, tho, and the chronic fatigue absolutely took over shortly after starting this new med. If my guess is correct, the MCAS reaction is a “stimulant” to my body, and by now turning it off at a more complete level (I’m hoping one day for remission!) I’m not getting that jolt to my system. My pulse has literally slowed down to everyone else’s normal when starting this new med. It’s no longer racing randomly in the 100-130 range while barely doing anything. So my guess is I’m not getting that same norepinephrine boost to dopamine conversion that a racing heart was giving me, and I’m going to need to adjust my ADHD meds (which double as my chronic fatigue meds). But after that…

Peeps, hope is damn hard for me. The last years I’ve been spending all my time trying to learn acceptance. Acceptance of limits, of a complete lack of control with health, acceptance of not knowing what may happen… Hope was really harmful to me at times because I was using it to ignore reality and the consequences I was gaining from pushing my body when it couldn’t do the things I was determined to do. Hope was the thing that allowed me to deny my disability and not seek help when needed, etc, because surely, eventually, I was going to figure this out. I had no idea how to pace myself with hope, because there was no acceptance of reality to balance out that hope, and it was self destructive. I can’t fully remember the last proper newsletter I sent out, but that it was years ago, and it was full of hope as I explained why I was going to destroy myself and my eyes on writing because what was the point of doing nothing in the face of chronic illness? Bluntly, I’m not good at being chronically ill, while I’ve been chronically ill for many years now.

So, when I talk about my hope to get back to writing in this context, now, after having symptoms alleviate that I’ve been dealing with for years before I even understood the MCAS was likely active and impacting me, after spending the most recent months to years seeking that balance and acceptance with reality, I think that it’s more measured. More realistic. There are a lot of things in life I want to catch up on, writing being one of them.

I don’t suspect that I will be able to keep the pace I did before — because when I started writing, it was basically all I could do. My arms and head were too heavy for my body, and the fatigue and fevers kept me bed-bound, and all there was was a laptop and my desire to escape the reality of what my body was going through by writing fun, dark fantasies. It was my fuel when nothing else was working, and it kept me going — but as such, it became an intensely unbalanced relationship with my time and energy. My answer was to break from it completely (because what is balance?). I’m going to have to find a way to write and not have it take over everything, which, with my mind quieting, feels far more achievable. My ocd isn’t exactly gone, per-say, but it’s not active or demanding me to act. I’m not glued to a screen (even though focused on a screen).

It’s going to be a learning curve, tbh, because it’s going to be brand new to me and this new brain chemistry of mine. There’s the real possibility that this med might stop working, or the MCAS might flare and become stronger than the med at times, and I’ll have to learn to adapt to that and practice a different level of self care when it comes. But for now, yeah, I’ve been thinking about writing for the first time in ages. I’ve got a lot of free time (cuz still disabled and chronically ill) and the fatigue has put the computer right in front of me with a brain no longer on fire. I’m curious to see where this will lead.

I’m keeping this informal, because I’m not ready yet. It’s only been 2 full days since starting this med, and the first day I tempted my heat sensitivity out in 80 degree temps and lost, getting a fever for pushing things. My fatigue is super strong, and I don’t know if I want to wrestle with taking a ton of notes on my old books right now to start writing a new episode. I just want to enjoy the stillness for a bit and see if this change is going to take root and stay. And from there, I’ll get to learn what this new version of me is going to want out of life beyond waiting to get better.

Wishing you all the best! ^.^