do you ever think about how it's easy to screen yourself for POTS, and yet somehow an unfathomable number of doctors won't recognize the diagnosis unless you've been literally tortured on a tilt table and then they reveal to you that your main treatment options are SALT & WATER?!
(yes, with many caveats about how not all dysautonomia is POTS and also that there are some prescription treatment options)
patient: I’ve been paying attention to my heart rate and noticed that it predictably jumps at least 30 bpm whenever I stand. Is there anything that will help?

doctor: sorry, I can’t tell you any of my medical secrets* until you’ve agreed to be strapped to a table

*get more salt
(getting more salt is not a cure for POTS & will not help everyone, but it’s often recommended first and there’s basically no reason to gatekeep that behind a prolonged referral & testing process.)
(well, there’s no reason to gatekeep that information unless you think that patients are unreliable narrators 🤔)
me:
doc told me I had POTS in 2017 after hr spiked above 190 in office. (major mold flare, maybe csf leak?)

year+ later was much milder & new neuro flagged in office (130-140). referred to cardio who checked in office, ordered holter. then another cardio, then TTT. overkill.

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More from @bennessb

19 Mar
This is definitely a must-read for all disability & healthcare advocates!

(especially if you’ve been comparing long covid to polio without acknowledging the decades of dismissal faced by ME patients & advocates who could see this mass gaslighting coming)

vice.com/en/article/qjp… Screenshot of text that rea...
the scream you just heard was me, reading this:

“The average time to an MUS diagnosis for a patient presenting with new symptoms was 4 minutes & 25 seconds—and the median time, which is more representative because it eliminates the effect of outliers, was 1 minute & 47 seconds.”
💯💯💯

“The failure of that system forces patients with complex medical conditions into the welcoming arms of charlatans whose main virtue is the time they spend listening.”
Read 4 tweets
26 Feb
[rant!]

everything about this last year has been so incredibly hard for so many people, including those of us with underdiagnosed & undertreated chronic illness.

and somehow it's like each new phase unlocks a chorus of new & distinct ableist dog whistles in media?
like at the beginning there was the thing where everyone acted like we were exaggerating the threat we faced. ugh.

and we've been missing from all risk assessments & plans, of course, because in all official sense we are Presumed Healthy, Despite Evidence To The Contrary. UGH.
and anyway I'm just thinking about how sometimes in order to survive with chronic illness you just... keep accepting that you've been let down by all these different people who were supposed to help you when you're sick. doctors & friends & family & colleagues.
Read 5 tweets
18 Feb
I am so incredibly angry that it never occurred to me to think this way until I didn't have a choice about it.
The shit we get told for needing a lot of sick days is inexcusable.
I always thought the point of taking sick days was to avoid needing sick days in the future. which is a very specific kind of chronic illness logic, and I don't know how widespread it is.
Read 4 tweets
28 Nov 20
Really interesting how many people interpreted this as mindfulness bashing.

This was about how I (and many other people) literally do not have the tools to interpret the signals our bodies are sending us until we've done years of research.

See also, my tweet about cipher keys.
[med trauma]

For most of my life, other people *insisted* that my symptoms must have a pattern if I just paid closer attention.

Most people acted as if there was an effort & attention gap rather than a knowledge gap.

This often took the form of literal gaslighting.
The tool I needed to "tune into my body" in my case was a 24/7 heart rate monitor. Nobody suggested that.

I didn't know that was data that could help me and the tools didn't exist for consumers yet anyway.
Read 5 tweets
28 Nov 20
If you have suspected or confirmed mast cell problems, what have been the most unexpected early warning signs that it's Time To Take A Benadryl*?

*or other rescue med, etc
I have flushing episodes that are pretty standard, but I definitely also have SUDDEN COGNITIVE & FULL BODY EXHAUSTION (affectionately known as bee brain because my brain uh, feels full of bees) that I am always thrown off by.

"Why do I suddenly need a nap?! Oh. Need benadryl."
One of the strangest discoveries of this crash is that bee brain is not inherently part of my fatigue.

When I unwittingly lived in toxic mold in 2017, I thought that feeling was just part of being exhausted?

I've still had cog fatigue this year, but it's much less... something.
Read 5 tweets
27 Nov 20
Doing this as a poll for the option of anonymity, but do any/many of you read through #NEISVoid tweets directly (not through my RTs)?

Just curious.

("When I ask" refers to me, Brianne asking, in case that's verbally confusing)
I know these categories are subjective but time itself is constructed and there's nothing we can do about it.
It's almost my bedtime and I have no idea how this poll will be split when I wake up! (Hopefully later than 5am.)
Read 5 tweets

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