Sparrow Profile picture
Feb 6 10 tweets 2 min read
[medical BS, medical diet]

so I talked to my GP about my blood sugar issues, which I was able to do because I brought one million snacks with me

and she offered to write an order for a continuous glucose monitor, even though she thought an insulinoma unlikely

welp

#NEISvoid
[medical BS, medical diet]

skipping over the hassle that was trying to fill the prescription (which involved Herculean assistance from my mom and the pharmacist)

I am *definitely* having a lot of hypoglycemic episodes

Like I didn't expect it to be this bad
[medical BS, medical diet]

I'm currently awake because the dang hypoglycemia alarm went off again

I kinda feel like that time I ended up babysitting a sick, teething baby who screamed the entire time

Exhausted, trying all the tricks, sobbing "what do you want from me??"
[medical BS, medical diet]

I finally got my blood sugar out of the "consider going to the emergency room" zone, but only after I went through all my usual snacks and finally resorted to just licking a mix of sugar and salt off my palm
[medical BS, medical diet]

This is my fourth "hey this Hypoglycemia could turn into a serious medical emergency if you can't get these numbers up" episode in the 12 hours I've been wearing the continuous glucose monitor

cool cool cool
[medical gaslighting]

I've only been saying, "hey I think I'm having serious Hypoglycemic episodes" for the past 20 months or so
[medical gaslighting, medical trauma]

But after I found out I might need to do a three day inpatient test in the hospital

During the pandemic

And also it's the same hospital where my three day inpatient EEG was Made of Trauma

I was second guessing myself
[medical trauma]

Plus my endocrinologist referred me to neurology, so I've been doing all the neurology tests

Which have frequently just reminded me of how terrible that previous round of inpatient testing was
[medical BS]

I won't know if this is because of an insulinoma or something else without a lot more tests

But I am hoping I have a chance to actually get some of those tests done
[medical BS, medical diet]

Woo! My blood sugar has officially reached "it's safe to sleep" levels again

So I'm going to attempt to sleep again

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More from @UntoNuggan

Feb 5
Possibly niche question:

Since they started, my post-viral cognitive issues (and honestly, some of the movement ones) have really felt similar to every time I've had Autistic burnout

Is that a thing? Like, can a viral illness cause Autistic burnout?

#NEISvoid
#AskingAutistics
[food intolerances [

In addition to just all the Inflammation and everything, this particular round of illness just... completely wrecked literally everything about my routine, including making many of my stims and safe foods...things that made me physically ill
Alternatively, maybe Autistic burnout is also caused by neuroinflammation? So that's why parts of this post viral giant MCAS havoc flare feels so similar to Autistic burnout?
Read 9 tweets
Feb 3
If you want a quick scientific explanation for how antacids like Tums work, here's a TikTok from ChemThug

(Not captioned, unfortunately, but I'll provide a quick overview below)
tiktok.com/t/ZTRGJEjqA/
Our stomachs are full of acid, and usually this is fine because it is how we digest food

Sometimes there's Too Much Acid, or we get acid reflux symptoms when the acid starts going up our esophagus
Antacids are basically a base that can bind with our stomach acid, turning it into water and some kind of salt

A lot of commercial antacids are made of calcium carbonate, which is what egg shells are made of

(note: do not use ground up egg shells as an antacid)
Read 5 tweets
Feb 3
[food science]

I've been reading more on nutrition and the "food matrix"

It seems like one problem is Western scientists have studied nutrients in isolation vs "how bodies actually digest things"

So they end up with contradictory results regarding "is this food good for you?"
[food science, fatmisia]

This article is...not great in terms of some bias regarding body size, fat, and moralizing about "good foods" and "bad foods"

But it's a relatively accessible explanation of what scientists mean by the "food matrix"

bbc.co.uk/food/articles/…
[food science]

This is a less accessible scientific review of recent research on how different cooking methods and other factors influence digestion

Including what nutrients you actually absorb

It covers a lot of topics related to the "food matrix"

ncbi.nlm.nih.gov/pmc/articles/P…
Read 40 tweets
Jan 30
pros: had a good appointment with my GP where I explained all the weird things about my headaches that make me think it's not a migraine

cons: my GP agrees that whatever is going on probably doesn't have a diagnostic code or like, any well-researched treatments

🫠

#NEISvoid
I explained some of the things I've been doing that have been working

My understanding of current research around positional headaches and EDS/MCAS/POTS

And possibilities indicated by extremely hot off the press medical research
My GP was like, "well we're officially outside the bounds of things I'm familiar with, so I don't know enough to say whether you're onto something....but I also don't immediately disagree with anything you've mentioned"
Read 34 tweets
Jan 28
so fun fact. if you sprain your ankle or something, tissue repair is supposed to go like this:

Inflammation

Then

Make more collagen (etc) and repair what's damaged

If you're perpetually inflamed because of immune system shenanigans, this process gets borked

#NEISvoid
Also, I know this is going to sound fake

But apparently the "inflammatory phase" after an injury lasts...a few days

A

Few

Days

(I guess if your immune system isn't perpetually in fight mode)

ncbi.nlm.nih.gov/books/NBK47044…
This is *probably* part of why there's a lot of overlap between MCAS and EDS

EDS causes all kinds of connective tissue injuries

Mast Cells are... theoretically supposed to help rebuild that connective tissue
Read 18 tweets
Jan 17
[medical diet]

So at this point in thinking about B5 and my microbiome, I feel both hopeful/excited and incredibly frustrated

Because it feels like I have tried all these complicated things to get some of my functioning back, and I don't know which ones are actually important
[medical diet]

And also I feel like I might have figured out the biological mechanism behind my own autonomic dysfunction

As well as my "I accidentally did too much, now my body is super angry, and I have crashed and lost functioning"

[medical diet]

Both of them seem to be tied to trying to reboot my microbiome

And what happens if I start to do it right, and then something goes horribly wrong

Autonomic dysfunction feels similar to refeeding syndrome
Read 41 tweets

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