Sparrow Profile picture
Apr 11 7 tweets 2 min read Twitter logo Read on Twitter
in a continuation of my microbiome research on myself, I am trying a probiotic... for my sinus microbiome

I'll post more details when I have more than a few days of data, but so far? I have been able to stop using my nasal sprays, and my sinuses remain unclogged 🤞

#NEISvoid
For contrast: typically when I miss a single Neti pot use or twice daily nasal spray

I get visible bruising along the sides of my nose, instant headache, and it takes like three days until I can breathe through my nose
*whispers* I have also been outside during peak DC Spring pollen season, without a mask, without deep regret for my life choices
Here's some of the initial research on the sinus microbiome/dysbiosis of the sinus microbiome contributing to Sinus Problems (tm)

science.org/doi/10.1126/sc…
The info I read about this sinus probiotic pointed out that it doesn't treat seasonal allergies

I haven't been able to find info on the sinus microbiome and MCAS, or if this particular probiotic is one that produces histamine (which can sometimes be a problem for MCAS)
I mostly got to a point where I was just really exhausted of all the nasal sprays, which...also potentially contain MCAS triggers

And I was like "welp I guess I'll find out how it goes"

This is definitely a "there's not enough research, guess I'm doing science on myself" thing
Here's a blog post about L. sakei, the probiotic I'm trying for my sinuses

With again, the caveat that this is not medical advice, the research on this is very recent, and we really don't know much about this probiotic + MCAS

lactobacto.com/best-probiotic…

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More from @UntoNuggan

Apr 13
once upon a time when I had more energy, I had this nifty zine style directory of where to find fair trade, indie, less ecologically terrible products

it's been like...three years since I could go to a thrift store, and I need to replace some things

does a zine like this exist?
my favorite part, honestly, was that I didn't have to track down like...an individual blog post on where to find clothes or housewares or whatever

It was just like a little phone book, and I could look up a category and read a short description of each business listed
Also that directory was where I found literally the most comfortable bras I have ever owned, which can be customized

Their workers are also treated less terribly than most other garment manufacturers

decentexposures.com/About
Read 4 tweets
Apr 12
Incoming 🧵 about self care I've used for my IIH that seems to help improve my glymphatic system drainage, brain fog, and headaches

Potentially relevant for others with neuroinflammatory conditions such as ME
Background info on new research on the anatomy of the glymphatic system (aka the brain's janitorial service) and potential implications for many chronic illnesses

I got diagnosed with idiopathic intracranial hypertension (IIH) in September 2020

It's basically a syndrome where too much CSF builds up in your skull, causing severe headaches, vision problems, and other awful stuff like that

liminalnest.wordpress.com/2023/03/19/idi…
Read 38 tweets
Apr 12
[psych survivor feelings]

just thinking about how one of my first experiences with hospital psych workers was being told to pick a word to describe my feelings, taking an (undiagnosed) Autistically long time to do that, and then being told the word I picked wasn't a feeling
[psych survivor feelings]

then they handed me one of those "feeling charts" and made me pick a word from the chart, but also got frustrated I was taking so long trying to process

and we had to repeat this process twice a day
[psych survivor feelings]

that first time, I ended up being so overwhelmed and upset about the whole ordeal that I just kind of randomly picked a "feeling word" that I thought they would believe I was feeling

this worked a little too well
Read 14 tweets
Apr 11
does anyone have any research papers about what mast cells are *supposed* to do in the digestive tract?

seeing a lot of papers about dysfunction, but honestly I always find it easier to troubleshoot when I understand how something works in like, a Platonic ideal

#NEISvoid
#MCAS
Paging

@Really_Richelle
@ahandvanish
@alexhaagaard
@8Eevert

For possible help finding info on this (see above tweet)
My general sense is that mast cells are responsible for sending two types of signals to the digestive tract:

Yes, it's safe to digest food rn

Nope, it's fighting invaders time, please pause digestion during this emergency
Read 5 tweets
Apr 3
I have been down a research rabbit hole for the past couple days, and now I'm coming up for air and sharing with Twitter

Today's topic: new research on the glymphatic system, and potential implications for Dysautonomia (and like... honestly every neurological issue)

#NEISvoid
First off, what the heck is the glymphatic system?

Well it's basically how our bodies clean gunk out of the brain

Including the leftover products from making/using energy, as well as immune waste
Clearing waste products out of the brain is Important, because some of them are neurotoxic

Meaning they can damage the brain if they stick around

Glymphatic System Problems (tm) have been documented in a number of neurodegenerative conditions, including Alzheimer's and MS etc
Read 50 tweets
Mar 6
hey so since we're talking about legalities of medications right now

this is just to say that a lot of jurisdictions in the US have laws that require you to carry prescription meds in their original pill containers from the pharmacy with the label and your name
I know a lot of folks (myself included) use a pill box or organizer, and sometimes those let you remove the little box for the day

This is especially helpful if you have midday meds

Unfortunately in many jurisdictions transporting pills this way is technically not legal
See also: not having space or energy to carry one million pill bottles of rescue meds with you, and decanting a few doses into a cute little container
Read 14 tweets

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