r/emergencymedicine • u/tallyhoo123 ED Attending • 2d ago
Discussion MCAS/POTs/Ehler Danlos/Gastroparesis
We are having more and more patients arrive with this combo and my God are they a difficult bunch.
I know the standard at the moment is symptomatic management - maybe some IVF, laxatives, analgesia and then back to community followup.
I have been doing a deep dive into these conditions and one paper hints that MCAS may provide a unifying diagnosis. It can cause multiple physical and neuropsychiatric issues which are common in this population with some evidence of resolution of symptoms after managing the MCAS with histamine blockers / mast cell stabilisers etc.
Does anyone have any evidence / anecdotal reports on whether or not providing these patients with H1 / H2 receptor meds or steroids may reduce their symptoms burden and hopefully reduce their ED presentations in the acute setting?
The more common this becomes the more issues in regards to ED workflow develop and I am trying to find some sort of quick fix that actually works as I'm getting tired of the arguments / the lack of trust / the difficult conversations.
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u/gaia-stellar 2d ago
in my area, many people in this patient cohort have ports/picc/g tube/j tube/cecostomy/urostomy and some kind of anticoagulation since they’re sitting in that power chair all day or developed a clot after their 19th port revision at the ripe old age of 28. I spend so much time managing complications of tubes that have been placed in young people to manage symptoms that seem to be mostly subjective, beyond our capabilities to measure and quantify What are we doing here? What is the end goal for these people?
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u/dfts6104 2d ago
Seeing this a lot in Cambridge as well. Shame on the providers doing these procedures
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u/Svetakgb ED Attending 2d ago
I would relocate if I had to deal with that all day. I can barely handle the handful we have currently. 18 year old wants a feeding tube for gastroparesis while eating chicken nuggets. Green hair and all
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u/instasquid Paramedic - Australia 2d ago
What's with the hair though? Why is this universal? Sometimes it's blue, I guess.
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u/dizzythoughts 2d ago
I had green hair before med school… and blue, pink and purple. I swear sometimes we’re normal.. ish 😅
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u/LainSki-N-Surf RN 1d ago
Only counts if you are also wearing Cookie Monster pajama pants.
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u/Ok_Negotiation8756 1d ago
And showing up to the hospital with your teddy bear or Squishmallow
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u/BreakInCaseOfFab 1d ago
Legit came to say I’m a peds nurse and had blue hair for about 2 years. The kids loved it, and I too am (mostly) normal.
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u/dizzythoughts 1d ago
Oh my favorite was when I had blue and pink and kids were calling me a mermaid or princess! Yeah ngl I’m a lil weird but have no interest in acquiring any chronic illnesses, my gallbladder exploding due to my love of cheese was enough for me thanks.
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u/indepthsofdespair ED Tech 2d ago edited 1d ago
Right? I’m a tech and I has a patient with MCAS and she had all these notes in the chart about no perfumes or scented deodorants and which soaps we could use and whatnot due to her allergies, but her hair was electric green and she was covered in tattoos. I would have thought she was allergic to that stuff.
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u/drinkwithme07 2d ago
Almost perfectly correlated with anxiety and somatization thereof, for whatever reason
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u/JTSB91 ED Resident 2d ago
I would love to see the study that shows how histamine release leads to neurologic changes that results in rapid acquisition of SpongeBob jibbitz on crocs
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u/moleyawn RN 2d ago
lmao wtf is up with this? seriously 9/10 of my patients with eds have SpongeBob crocs
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u/OddInstitute 2d ago
EDS is very correlated with autism and ADHD, so while we can’t say that EDS causes SpongeBob crocs, it is probably reasonable to screen for EDS in people presenting with SpongeBob crocs.
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u/heyinternetman EM/CCM/EMS Attending 2d ago
Are you unhappy and can you flex your fingers? EDS
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u/MeatSlammur BSN 2d ago
Thanks for the diagnosis doc. I have 4 ED’s within a 30 minute drive I’m going to ask for pain meds.
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u/heyinternetman EM/CCM/EMS Attending 2d ago
Shit you have pain too? -> fibromyalgia
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u/MeatSlammur BSN 2d ago
I’m just now finding out men can get fibromyalgia as well. Had to google it. Wow.
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u/descendingdaphne RN 2d ago
IMO it’s a mixture of socioeconomic class and an emotional maturity level that didn’t develop much past middle school…both of which track for this patient population.
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u/MeatSlammur BSN 2d ago
Everyone I know with EDS grew up pretty rich. One of my coworkers had the POTS/EDS, etc and she grew up with household staff. I saw her after a couple years later and she had gotten her port removed and was normal. I asked about her POTS and she said it went away when she met her husband.
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u/purebreadbagel RN 2d ago
went away when she met her husband.
Huh, apparently some dicks are magic. The more you know.
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u/GeetaJonsdottir Physician 2d ago
Because it's a bunch of young girls who reached the edge of adulthood and then psychogenically bounced off. That's the cleanest explanation I've ever heard.
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u/moleyawn RN 2d ago
that makes sense. kind of like a failure to launch. I know multiple people who fit this very same description that I went to high-school with. one was even an athlete and then spiraled during. college and now is disabled, eds, the whole thing.
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u/STDeez_Nuts ED Attending 2d ago
This is the answer. Anecdotal every one of them I’ve encountered have been young white girls. Most are in pajamas. They also have green, pink, blue hair. Some hair a “service animal”.
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u/instasquid Paramedic - Australia 2d ago
What's with the commonality? And why is it global?
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u/Hildawg_ Physician Assistant 2d ago
The interesting part is MCAS is characterized by acute reactions and requires diagnostic testing of tryptase levels, and is not a constellation of chronic vague symptoms
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u/mezotesidees 2d ago
I find 1.25 mg of droperidol does a great job of managing these patients. I use 2.5 if they seem …. Uh… extra afflicted.
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u/d0ughnut_of_truth Sisyphus :illuminati: 2d ago
10mg if you want to stop the afflicting
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u/ShesASatellite 2d ago
My brain read your tag as 'syphilis illuminati' instead of 'sisyphus illuminati' and I was about to have questions.
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u/ForceGhostBuster ED Resident 2d ago
Patients at my place have started listing droperidol as an allergy or refusing it but man it sure is magical
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u/Comprehensive-Ebb565 ED Attending 2d ago
I usually start with 2.5 IV or 5 IM. Works great. And for the agitated/drunk/high the maxim is 5 for biting 10 for fighting.
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u/ghinghis_dong 2d ago
I am from pre-black box droperidol.
Our dosing for agitated patients with haldol was logarithmic: 10, 20, 40, 80
When droperidol was noted to work faster than haldol: 5, 10, 20. I never had to get to 20
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u/dix-hall-pike 2d ago
How do you justify this? We don’t have droperidol in the uk (at least where I work). If we did I’d love to use it on all these difficult/nonsense patients but I just can’t imagine how you actually legitimately justify its use beyond ‘it makes the patients less annoying’.
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u/Sci-fi_Doctor ED Attending 2d ago
Droperidol is good for nausea. So if they are complaining of that with the gastroparesis, it makes perfect sense.
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u/mezotesidees 2d ago
It fixes poor GI motility, nausea, headaches, cluster B, and psychosomatic pain long enough for the patient to feel fixed and be amenable to discharge.
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u/a_neurologist 2d ago
“One paper hints” = purported treatment is balderdash. I’d discourage steroids because they have just the right combination of potential for harm and transient nonspecific benefit and superficially validating mojo and uselessness long term that they just amplify the problem for the next doctor, which I know is not what you’re trying to do in the ER.
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u/SkydiverDad 2d ago
Send them back to a MCAS/POTS/Chronic Lyme clinic who will listen to their story for an hour and a half work up and then charge them $1500 cash price for a vitamin/supplement infusion IV that they will immediately pee out.
See so many of these clinics in our area. And the MCAS/Chronic Lyme people love them.
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u/Fit_Customer2972 ED Attending 2d ago
Droperidol re-eval and D/c. Everyone leaves happy.
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u/Ok-Beautiful9787 2d ago
Not if they have a "Droperidol Allergy" which many of patients do now 🙄
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u/ExtremisEleven ED Resident 2d ago
What a coincidence, I give it with Benadryl.
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u/RunBrundleson 2d ago
I had a few patients absolutely lose it from the akathisia and run out of the department. It does make the dispo for some of these challenging patients easier but perhaps not exactly an ethical means of arriving there. I just give the Benadryl everytime now because you can’t have a migraine or nausea if you’re unconscious, works well for symptom relief.
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u/EmoPeahen 2d ago
One dose of haldol gave me unrelenting akathisia for four days after surgery. It was HELL.
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u/justdoingwhatican- 2d ago
Pharmacist here, commented somewhere above about how I was recently droperidol’d in the ER. Four hours of akathisia while simultaneously being too sedated to move without great effort. I was terrified, trapped with a racing mind and bouncing legs while the rest of my body could barely move. If I could have moved I probably would have run out of the hospital.
Knowing what I described above happens to people (as you said, you have had people lose it from this drug and run out of the hospital) and admitting that it’s not exactly an ethical means of arriving to an easy dispo, are you still fine with using it on difficult patients because it might not cause them extreme distress, it might just knock them unconscious?
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u/ExtremisEleven ED Resident 2d ago
I am guessing you aren’t an ER pharmacist because you would know this is a relatively rare side effect that is easily treated and droperidol is a wonderful drug that treats a lot of symptoms without “knock[ing] them unconscious”. Most people get a good nap and stop puking their toenails up.
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u/justdoingwhatican- 2d ago edited 2d ago
Yup, OR pharmacist, seems to be used much more frequently in the ER than in the PACU for PONV. And that’s why I’m here, to learn what you all typically see in your patients since you seem to use it so frequently.
Edit to add: perhaps I see it less in PACU despite it being a wonderful drug for nausea/vomiting because we’re trying to wake the patient up, not knock them out lol
Edit to add again, sorry last time: I didn’t come up with “knocking the patient unconscious” on my own btw, it was what was said by the commenter I was asking the question to.
I am relieved to hear that the akathisia I experienced has been extremely rare in your experience, the idea of a patient going through what I went through makes me feel physically ill. Clearly I’m still having a hard time with what happened.
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u/CuragaMD ED Attending 2d ago
I’m sorry that happened to you, it sounds horrible. I do try to warn patients about the possible side effects when I give it for HA/NV or abdominal pain. It’s such a good drug and helps so many things but I have indeed seen some bad reactions.
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u/ExtremisEleven ED Resident 1d ago
I’m sorry you experienced that. For what it’s worth, I give this drug out like candy. It works on nausea and vomiting but it also works on anxiety and agitation as well as diffuse abdominal pain. I’ve had 2 cases of akathisia, both in the same week, both were awake and able to walk, just stating that they felt antsy and wanted to walk out. Since then I have given Benadryl with it unless it’s a cannaboid hyperemesis patient that has had the drug before and has a documented tolerated dose.
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u/LeVoPhEdInFuSiOn RN - Phone Bitch (Telehealth Triage) 2d ago
All hail our lord and saviour, Risperidone.
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
maybe some IVF
Please stop fertilising these patients.
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u/MeatSlammur BSN 2d ago
They’re allergic to children so usually the pregnancy doesn’t make it full term
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u/HoneyAppleBunny RN 2d ago
PNES as well.
I feel bad for these folks. All of them are loaded up on benzos, muscle relaxers, opioids, and sometimes psych meds. How they stay awake through the day is beyond me.
All of them seem to be allergic to haloperidol & droperidol as well, which from what I’ve seen, manages their symptoms the best.
And we “can never figure out what’s wrong” with them either. And they almost never want to follow up with the specialists. Endless cycle.
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u/dfts6104 2d ago
Poor coping skills: a case study. Best bet for reducing ED visits is CBT and outpatient psych
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u/ghinghis_dong 2d ago
Don’t forget aerobic exercise for POTS!
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u/Efficient-Lab RN 2d ago
I’m nearly 40 and was diagnosed with POTS when I was 15, years ago. I was advised to take up rowing because I could stay sat down.
Massive improvement in my symptoms within weeks.
I’m a coxswain now because I’m little and gobby, but it was the best advice I was given at the time!
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u/buttpugggs Paramedic (UK) 2d ago
The better shape I am getting into myself the more I'm realising that so many of my patients issues would be solved or at least made much more manageable by just getting of their ass for a walk a few times a week and eating a bit less shite.
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u/instasquid Paramedic - Australia 2d ago edited 2d ago
But you're a monster if you suggest that diet and exercise might solve 70% of their problems.
Source: former fat piece of shit, still fat now but can run more than a mile without going into arrest.
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u/Ballersock 22h ago
It's not even just about being overweight. I was rail thin but sedentary and I felt awful most days. Now that I work a job that gets my heart rate up and 10k+ steps a day, the days I feel awful are few and far between.
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u/mezotesidees 2d ago
“But I can’t do that because of my chronic fatigue syndrome and my EDS!”
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u/IonicPenguin ED Resident 2d ago
I have diagnosed EDS and I feel like shit after a few days of chilling on the couch. Exercise is necessary for normal functioning.
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u/moleyawn RN 2d ago
I had a coworker once who has EDS and she was a power lifter
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u/SocialWinker Paramedic 2d ago
Strengthen to muscle to support the joints, right? At leading that’s how I’ve heard it explained in the past.
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u/IonicPenguin ED Resident 2d ago
I’ve been wondering why I’m so tired…shit, I’ve been on vacation and not exercising at all.
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u/jendet010 1d ago
MCAS/POTS/Ehler Danlos is the new Chronic Lyme/MTHFR/MCAS mom with a kid with PANDAS
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u/ah_Callie 2d ago
As someone with actual diagnosed POTS, these patients embarrass me. When I worked in an ED, we had someone come in with the “big three” (POTS, EDs, MCAS) and she acted just like the Tik Tok girlies do, but thankfully she wasn’t filming anything.
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u/ExtremisEleven ED Resident 2d ago edited 2d ago
Step 1: who diagnosed you with these things? I’ve had exactly 1 person who had a legit diagnosis from an actual physician. They had notes from ortho detailing their dislocations.
Step 2: Discussion about management of chronic illness in the ER. Spoiler, we aren’t fixing anything but can treat symptoms.
Step 3: here is your option menu, droperidol, fluids, antihistamines, please choose. I will come back in XX time to reevaluate (don’t go back otherwise, no getting sucked into multiple long conversations).
Step 4: discharge
Step 5: most importantly, move on. A good chunk of these people are never going to be happy with you. They aren’t actually looking for treatment because this is a social media diagnosed illness and they’re looking for content fodder. It’s not worth perseverating on.
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u/tallyhoo123 ED Attending 2d ago
This one girl in particular has had a bunch of "specialists" diagnose her based on clinical basis.
No tilt table I can find.
No EP studies because they didn't want to medicalise her.
No gastric motility studies - this one gastro specialist seems to be the local expert and puts everyone on PEJ feeding.
No genetic testing for EDS.
The MCAS was also diagnosed by a specialist.
Interestingly enough I cannot find any proper documentation on their file only hear say comments from other specialists stating another specialist has already diagnosed these issues.
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u/NefariousnessAble912 2d ago
Yep there is a phenomenon of pulling up by the bootstraps where once you get a diagnosis in the chart it reverberates for the ages.
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u/instasquid Paramedic - Australia 2d ago
I've seen a psych ask one of these patients "What would it mean to you, if you woke up one morning and all of these illnesses were cured?" and the patient hit the fucking roof.
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u/Whatsthathum Physician 2d ago
Can you tell us more? Do you mean the patient became angry? Presumably because their identity is now fully wrapped around being sick?
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u/instasquid Paramedic - Australia 2d ago
Yep, mostly angry at the idea that their "community" of other sick people would be ripped away from them if they were healthy. Honestly I just felt that they were a very lonely person who found some toxic people to give them attention.
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u/ExiledSpaceman Charge RN- Pls more beds 2d ago
“Here’s some IV fluids, peptides, and hyperbaric treatment for your ‘fatigue”
I only see the functional medicine folks working in med spas.
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u/CompasslessPigeon Paramedic 2d ago
Tiktok ushered in the POTS/EDS/MCAS/PNES folks and suddenly the fibromyalgias and chronic lyme patients have disappeared
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u/LeVoPhEdInFuSiOn RN - Phone Bitch (Telehealth Triage) 2d ago
This is the common denominator. As someone with Autism and ADHD (diagnosed by a developmental paediatrician), the changing of conditions to a mere social identity has been damaging.
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u/thehomiemoth Physician 2d ago
It seems suspicious to me just because the sheer number of them that maligner openly for IV push Benadryl.
Throw it in a 100cc bag of NS and run it in over 10 minutes and you’re the worst doctor they’ve ever had.
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u/SolitudeWeeks RN 2d ago
Listening in because I'm pretty sure my grandmother who was always cast as a hypochondriac actually had fibromyalgia or SEVERE depression (not just the regular really bad depression) and the way we talk about this cluster of patients reminds me of the way we used to talk about pain patients.
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u/Kai_Emery Paramedic 2d ago
It’s so hard because true MCAS (if this kid was faking dropping his o2 sat mid transport I’m impressed) is terrifying but I also know someone with MCAS who laughed about “roiding out” at someone who dared to wear perfume in walmart
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u/Amerakee 2d ago
My girlfiend has legit MCAS and it is absolutely terrifying at times. I went into more detail in my comment here to OP but it got so bad at one point that at the slightest cough I would be immediately checking for hives, considering Albuterol, and making sure her Epi was nearby. After several multi-day stays in the ICU where she was the most interesting patient to the residents, the lack of resources and the overall doubt of those in the field about this condition can make those who actually suffer from it feel so isolated.
I'm pretty sure she's singlehandledly taught half the medics and ED docs at my service what legit MCAS patient looks like lol
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u/tdubs6606 2d ago edited 2d ago
So I’m an ER PA and I have these conditions. And shit some of the population really gives us a bad name. The only time I’ve sought urgent care was for when my headache episodes are so bad I’ve vomited to the point I can’t keep myself hydrated with zofran:phenergan”. However I will say some of the most helpful treatment options for my symptom management has been mast cell control. I believe you are correct. The problem is it’s not an immediate fix. Those have helped me with daily compliance. Zyrtec, compounded ketotifen, Quercitin, PEA, oral cromolyn. Honestly the oral cromolyn almost helped my GI symptoms immediately. I don’t know that there is an “acute fix” which I what I try to get the population to understand. It’s so difficult because honestly, the patients are miserable and don’t understand and want help. I would perhaps mention those medications/supplements in your discussions, and the importance of a primary care who can prescribe the compounded ketotifen and oral cromolyn. And no Medicaid won’t cover it.
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u/iceberg-slime ED Attending 2d ago
For a real treat, head over to r/chronicillness
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u/tallyhoo123 ED Attending 2d ago
I've joined the r/FND subreddit which is enough for me
It's interesting how they equate their illness.
I proposed a problem.
Only 5 beds in the ED but 6 patients.
5 of the 6 have things like STEMI, Stroke, sepsis, traumatic injuries, bowel obstruction and the 6th has an FND flare-up.
Who do they think should get the beds - they all stated the FND patient should get the bed instead of one of the objectively life threatening pathology patients.
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u/Bikesexualmedic 2d ago
…what is FND? I looked at some of those subreddit posts and unsurprisingly not a single one was helpful.
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u/IonicPenguin ED Resident 2d ago
Functional neurological disorder a new name for an old problem.
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u/instasquid Paramedic - Australia 2d ago
I'm not allowed to call if the "fakie shakies" anymore. And 10ml saline to the face is no longer a permitted treatment.
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
A polite rebrand of one of the subtypes of shit-life-syndrome.
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u/NyxPetalSpike ED Support Staff 2d ago
Shit Life Syndrome should be an actual diagnosis.
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
Well they sort of do it in psych when they say you haven't got depression, you're experiencing an appropriate reaction to your circumstances.
But I agree. We talk about the biopsychosocial model of health? Well we can diagnose biological and psychological illnesses. Where are my social diseases? That's what these people have.
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u/LeVoPhEdInFuSiOn RN - Phone Bitch (Telehealth Triage) 2d ago edited 2d ago
Faking & Neurotic Disorder; oops, I meant to say Functional Neurological Disorder. Surprisingly, the only 'neurological' condition that responds to psychotherapy.36
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u/mezotesidees 2d ago
This is hilarious and the results are not at all unexpected. But man, I could not spend any time in that sub without wanting to pull my hair out.
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u/tallyhoo123 ED Attending 2d ago
I'm trying to better understand this population of patients, trying to find a better way of managing them and to get then out of the ED without such negative force being needed.
So far it hasn't worked.
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u/LittleBoiFound 2d ago
It’s such a difficult problem because they want to be sick and you went to med school to, you know, help people feel better. A person above said to best, they reach the brink of adulthood and then drop off. They need psychological support and treatment which they typically have zero motivation to get. That’s the last thing they want. I’m sure some of them want the strong negative force because it gives them ’content’ and reinforces their suffering, how misunderstood they are. We need to absolutely stop doing unnecessary medical procedures on them. Then when they come into the ED they need to be greeted with strict boundaries and concrete rules. Here are your three options, pick one and then be discharged or be discharged right now. Black and white, minimal emotion shown.
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u/happyhermit99 2d ago
It's not going to work until you have buy in from your peers, who mostly joke about it. It's not the ED's responsibility to better understand the population but I get it since they bottleneck the dept with low acuity issues.
Only thing you can do is set specific protocols for the diagnoes and state expectations at the start of the appt so the end is. Keep them ready to hook
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u/ExiledSpaceman Charge RN- Pls more beds 2d ago
It’s funny I worked in a movement disorder center for a while and our attendings dreaded dealing with functional patients. The initial patient visit is usually the worst but they don’t call back often. Most of the time it’s just psychotherapy and OT. Though I guess because our resident clinic screens patients to even see if they’re appropriate for them to see us.
Then I learned about the sickTok side of it. Holy fuck that’s insufferable, some of them don’t even come across as functional….just annoying. I’m glad the FND patients we had accepted our recommendations and left us be.
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u/Real_Ad_9971 2d ago
Could you share that post you made on the FND subreddit?
I searched for it and couldn't find it. I have trouble believing people would really answer that, I'd like to read it myself.
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u/NefariousnessAble912 2d ago
ICU lurker here. When you see a constellation of rare diseases in one patient, pause and realize this is so statistically improbable something else must be wrong. And then ask how they were diagnosed for each disease. Almost all with the combo are diagnosed by social media and haven’t had any serious work up. I actively remove their lines and tubes or make it part of the plan if there is any complication from them - seen a lot of bacteremias and erosions of the tunnels telling me they are messing with the tubes.ie trying to minimize harm without being too confrontational but also not buying into their diagnoses unless i can make them myself or a reputable expert has made it. And when appropriate enter factitious disorder in chart. And yes be ready to see them again next round. It’s very depressing for us but it helps me
to imagine what their lives are like.
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u/RedNucleus ED Attending 2d ago
It is less often factitious and more often a somatoform disorder. But yes, this disease has worn many masks over the decades, and this is the latest manifestation. We really need more research in somatoform disorders and sociocultural illnesses.
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u/Hour-Palpitation-581 Physician 2d ago
Immunology here - a constellation of rare findings is typical of many of our disorders. Please refer or consult.
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u/Neat_Seagull_1842 2d ago
That’s a bit silly. We know that these conditions often have underlying genetic causes. We also know that the genes / epigenetic factors probably have some overlap. They are rare conditions but are often comorbidities.
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u/Perfect-Tooth5085 2d ago
So glad my population hasn’t discovered these illnesses yet 😂
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u/LittleBoiFound 2d ago
I can’t tell if you’re a veterinarian or work in labor and delivery. Whichever it is, I hope you count your blessings daily.
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u/Perfect-Tooth5085 2d ago edited 2d ago
Nope just work in the Bronx .. we all fight different battles i guess 🤷🏻♀️
Adding … in the 10 years I’ve been there i recently saw my first MCAS patient .. she had a note on her phone that said she’s been intubated 36 times (to go along with her 36 allergies) and needed 100 mg iv Benadryl STAT. She Also had recommendations for doses/meds for intubation if needed. She went to 3 EDs that day and was intubated 0 times
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u/Sad_Sash Nurse Practitioner (Rural ED, but at least we have CT) 2d ago
had a woman tell me yesterday she was allergic to the sling we put her in for her Radial Head fracture because of her undiagnosed Ehlers-Danlos Syndrome......
i said as gently as i could...have you considered that this could just be contact-dermatitis because the weather is warmer? lol jeeeeesus these people
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u/Praxician94 Little Turkey (Physician Assistant) 2d ago
If these illnesses were truly real (except real Ehlers-Danlos but none of these ED patients have had genetic testing they just bend their thumb and it goes farther than they think and they self diagnose), Droperidol would not fix them all, which it does.
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u/tallyhoo123 ED Attending 2d ago
I love a good dose of droperidol but sometimes the question comes up: what is it?
I explain it's BG and how it works and it's off label uses etc but then I get hit with the "it's an anti-psychotic so you think I'm crazy" then they refuse....
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u/Adrunkopossem EMT-A 2d ago
Genuine question. Do you have to mention it's an anti-psychotic, or can you leave it at anti-emetic, can help with migraines and vertigo?
These kind of patients never really want to talk to me so I don't know how deep they question you guys.
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u/bitemarkedbuttplug RN 2d ago
When I give it for something like nausea, I definitely just say "droperidol, it'll help with the nausea". 90% of patients don't care about drug class etc, and if they question it, then I say it's an off-label use, hype up its effectiveness, and leave it at that.
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u/justdoingwhatican- 2d ago edited 2d ago
Genuine question here as well.. I’m a hospital pharmacist, primarily work in the OR/procedural areas but I lurk here because I love what y’all do and a lot of my patients start out in the ER so it’s great to know how things work in your world.
For anyone who doesn’t care for the background info: does droperidol have a legitimate use for abdominal pain in some patients? As in the patient is not just heavily sedated/tortured by akathisia for hours and unable to even tell you they’re still in pain, they truly just get relief from their abdominal pain and they are happy with the results?
Here is why I’m asking:
I was recently given droperidol + Benadryl in the ER. I was confused why it was ordered for me because I’ve typically only heard of it for cannabis hyperemesis and of course PONV over where I work in PACU. My nurse knew I am a pharmacist there at the hospital but the ER doctor did not because she didn’t ask and I didn’t think it was relevant so I did not mention it, but when ER doctor poked her head in I did say “nurse said she’s grabbing droperidol and Benadryl for me, just making sure you know I don’t smoke weed so I’m wondering why it’s ordered for me?” ER doc just said oh that’s ok, it’s great for abdominal pain after opioids fail. Knowing things are used off label all the time and given I was still in pain and nauseated, I said okay great, I’ll try it. (Although in hindsight opioids didn’t fail? I was initially given one dose of fentanyl, it worked, and then an hour later it wore off.) I also want to add I was not “scromiting”, I was not agitated, I was quietly sitting in my room in pain, and was always cooperative despite hurting.
I was NOT told I was being sedated. I know droperidol has sedating properties but when I asked and was told it was being used for abdominal pain I figured it must be an incredibly small dose. My experience was horrific. I was trapped in my own mind, wanted to scream, legs jumping all over the place, yet the rest of me somehow could hardly move. At one point, probably 1 hour in, my heart rate jumped up to 200s and O2 sat dropped into the 70s (when I heard several people in my room I forced my eyes open and saw like six people standing around me looking panicked and realized they were pulling on my clothes to get me hooked up to a cardiac monitor that I didn’t even have on yet). I was too drugged to even say anything, I could only point towards my heart which felt like it was exploding out of my chest. My heart rate eventually went back to the 130s (which is where it had been since I first arrived at the ER). Later when the ER doctor stopped by to tell me the CT scan showed a fluid collection in my abdomen that the surgeon was looking over she asked how the droperidol was. I just said something like “it worked for the nausea” because I was still so confused and groggy and afraid that she would order more droperidol if I told her I was still in pain. Obviously patients can usually refuse anything, but my brain was not even rationally processing, all I could feel was dread and fear. Soon after she stopped by I was admitted and obviously never saw the ER doctor again.
So all that to say, are y’all truly using this drug to sedate people you don’t believe are in pain/nauseated? Reading through droperidol posts on this sub that’s how it comes across. And if that’s the case, what did I do to deserve it?
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u/Nurseytypechick RN 2d ago
We do use it for abdominal pain and migraine- it's not punitive. It does cause akathisia and anxiety in some folks- which should be promptly treated. I would suggest adding this to your chart under adverse reaction. For some folks it works incredibly well. For some of the psych/anxiety origin it also provides amelioration of some of those symptoms without the problem of respiratory depression, controlled substance and dependence etc.
The problem here is the overlap between nonspecific symptoms and inability to cope/psychologically involved problems that cannot be adequately treated or sussed out in the ED with repeat visits from the same cohort of folks. There's a lot of jaded folks in here, rightfully frustrated with this systems issue. I get it.
It takes active work to continually identify your internal biases and mitigate them while still maintaining a functional approach to efficient care (32 CT scans and a PICC line for meds/fluids are harmful, for example, for many of these folks.)
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u/justdoingwhatican- 2d ago
Thanks for the response! Relieved to hear it truly does work for most and I just happened to have an adverse reaction. I’ve been really sick and haven’t had a chance to dig into my pharmacy related references about droperidol so hearing insight from people who are actually administering it is helpful.
I was so uncomfortable, a deep nap would have been welcomed, but the 4 hours of being trapped in hell was torture.
Unfortunately it sounds like if I add this drug as an allergy due to adverse reaction I’ll be viewed as a drug seeker.. a lot of jaded folks out there, seeing that allergy on my chart sounds like it’ll make a lot of providers have an even harder time checking their bias. But I’m hopeful I’ll never need the ER again and this won’t be an issue lol
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u/drinkwithme07 2d ago
Yes, droperidol is extremely effective for abdominal pain and headache, moreso if nausea/vomiting present, but sometimes even without. Gave it recently for a cancer pt with persistent upper abd/lower chest pain and she felt better.
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u/harrehpotteh 2d ago
My genetics group in my area won’t even see people for suspected EDS, like actual suspected EDS, which is a little irritating. To be clear in five years there is only one person that I wanted evaluated for real. I’m a primary care NP idk how to add flair.
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u/NyxPetalSpike ED Support Staff 2d ago
To see the Tourette’s special in my area, you need to a referral from a GP and a referral/letter from a psychiatrist/psychologist.
They are tired of the Tik Tok girlies.
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
The one that always gets me is EDS + Fibromyalgia.
No. If you actually have EDS then you have an underlying cause for your pain and you do not have fibromyalgia. If you claim to have both you are clearly full of shit.
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u/SheBrokeHerCoccyx 2d ago
Some believe the chronic sensitization from joint laxity starts a cycle of “nerves say pain, but no cause found”. Trying to differentiate between acute injury vs fibromyalgia “flare” can be tricky, particularly if there isn’t a full dislocation or tear. If NSAIDS aren’t hitting it then it’s probably fibromyalgia. However treatment is the same - physical therapy, Lyrica, cymbalta.
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
If there is an underlying diagnosable illness then it cannot be fibromyalgia
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u/Hour-Palpitation-581 Physician 2d ago
Please order tryptase within 2-3 hours of symptoms onset to facilitate the outpatient workup. And just give them epi IM.
Yes antihistamines and cromolyn help with MCAS.
Please also check if they are safe at home.
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u/Amerakee 2d ago
Not an ED Doc, only medical experience is EMS, but can chime in as someone who is currently dating someone with MCAS and POTS and can speak personally/anecdotally on how H1 /H2s have benefitted us under the care of a physician.
To get this out of the way, no she's not the sicktoc type but the type that was diagnosed prior to TikTok existing and has landed her in the ICU several times with repeat anaphylaxis. This woman hates everything related to healthcare and hates being the center of attension. We went from being able to eat anything to suddenly any food that is high in histamine or is a liberator could trigger anaphylaxis.
The worst encounter we had with my local ED and ICU was nearly 5 days of anaphylactic reactions every 30-min to every few hours, despite epi drip and consistent benadryl. For a solid year we were back in the ED for anaphylaxis over 50 times, it was hell. It got to the point that our ED would immediately start the admission process upstairs if we had given two epi-pens pre hospital.
When this first started we were in the ED every week with anaphylaxis. After we figured out the histamine intolerance part and made some heavy diet modification, we were back every month instead of every week.
We found real tangible progress with Dr. Lawrence B. Afrin, a hematologist/oncologist and self made MCAS specialist based out of West Chester NY. After he reconfirmed the diagnosis of MCAS to his particular standard and had her trial every commercially OTC H1 for a week each, stick with one that worked best (ended up being two) and repeat with H2s.
Now on the H1s and H2 + diet, we've been to the ED for anaphylaxis 3 or 4 times since September 2025, excluding another 10 episode anaphylaxis post surgery as several medications used with anesthesia can result in histamine dumps. It has made a huge difference and put our lives back on track.
From what Dr. Afrin had discussed with us is that MCAS, POTS, and EDS are all very commonly diagnosed together and he suspects that MCAS may be the instigator in some way.
Ive only glossed over some of the papers hes authored but he's the only resource that helped us get back to living our lives.
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u/Nurseytypechick RN 2d ago
Any talk of using cromolyn? I know that's another adjunct in the MCAS toolkit.
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u/Amerakee 2d ago
She tried the type you mix into water maybe 10 years ago and she didn't see much difference, but that was when she was just sensitive to chemicals and certain foods. She didn't start going into anaphylaxis due to it until about 2 years ago.
Dr. Afrin has said that each of his patients responds well to different H1 and H2 combos and requires trialing, but she currently takes fenofexadine HCI 180, pepcid 20mg, and Claritin 24hr x2 per day. We have benadryl and Albuterol for breakthrough symptoms to prevent anaphylaxis, and of course EPI for if it happens anyway.
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u/Nurseytypechick RN 2d ago
I wonder if biologics like Dupixent or Tezspire help mitigate any of the mast cell aspect of it. (Dermatographia and asthma that presents as severe bronchospasm here.) Also on the pepcid, zyrtec, singulair combo.
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u/BedazzledVagina EMT 2d ago
Some of these comments from doctors on this thread is why I gave up on finding out the cause of my symptoms. If I’m going to be treated like I’m mentally unstable and met with eye rolls then there is no point.
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u/Hour-Palpitation-581 Physician 2d ago
A&I here. I'm tired of this becoming the new hysteria.
Our field is full of diseases with diagnostic delays of decades: CVID, HAE, alpha-gal, mast cell disease, X-linked CGD carriers. Autoinflammatory disorders like A20 haplo insufficiency that only get diagnosed when someone orders the correct genetic test.
A lot of these patients have intermittent symptoms. "Normal" testing.
"No objective findings" IME often means "the tests I know how to interpret are normal."
Physicians say there are no objective findings and then start telling me the ANC when I ask about the ALC. If you don't know the eosinophil count, lymphocyte count, tryptase, vaccine responses, CH50, DHR, etc etc depending on presentation, you often haven't done even the superficial testing that might show you the problem.
The scientific response to an unexplained pattern is to try to explain it, not to pathologize the people reporting it.
And as a side note, given how common violence against women is, we should probably spend more time thinking about the physiologic consequences of chronic coercion, intoxication, hypervigilance, sleep disruption, and unsafe environments instead of assuming unexplained symptoms are somehow self-inflicted.
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u/tallyhoo123 ED Attending 2d ago
Not via the emergency department.
Those tests can go through the GP / PCP.
Emergency department is not a place for ongoing diagnostic tests - it's for emergencies.
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u/Hour-Palpitation-581 Physician 1d ago edited 1d ago
Tryptase needs to be drawn within 3h of symptom onset.
Or just resign yourself to continuing to see the patient convinced they have MCAS because nobody is able to rule it out 🤷🏾♀️
ETA to be clear, I'm trying to understand how one simultaneously complains about "fake MCAS patients" and refuses to draw the only test which can rule it out.
Agree re:emergencies, though. I'm always shocked at the ANAs drawn in the ER 🤔
Usually turns out they wanted an excuse to through steroids at a problem?
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u/traumabynature 2d ago
Hit them with some droperidol.
Treats the nausea/vomiting, anxiety, and also helps with the personality disorder.
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u/ktbug1987 2d ago edited 2d ago
NAD. Genuine question for you: what are they presenting for?
Like obviously MCAS can cause anaphylaxis but outside of that, what is the ED visit for? Uncontrollable vomiting? Something else? I’m just curious what brings someone to an ED with these once they know what they have that has you asking about histamine blockers and steroids.
E.g., I’ve had pretty severe gastroparesis for several years 2/2 severe lupus / autoimmune neuropathy and of course POTS comes with autonomic neuropathy (please don’t downvote me for saying that at least read my comment). Both are actually thankfully doing well right now after I recently got CAR-T on clinical trial (not easy but worth it). But before that, I was on liquid and soft food diet for years alongside my lupus medications, which included steroids. Steroids seem like a big jump given the complications from them and they will pretty much do a lot to keep you off or at least low on them in the lupus world? One of the biggest outcomes from my car-t trial is how long I stay in steroid free remission.
I fly by r/emergencymedicine because it’s recommended a lot since I’m in r/familymedicine (my wife owns a family practice and I help out; I have a doctorate and also study healthcare delivery but mostly don’t do ED stuff so I’m just passing through).
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u/tallyhoo123 ED Attending 2d ago
One girl in particular presents with:
- tachycardia
- anaphylaxis without any signs (gives herself adrenaline)
- abdominal pain without any outward display of severity
- vomiting without any objective findings
- hypokalaemia which we think may be self induced either by restricted diet or self induced vomiting
- limb paraesthesia
- non-epileptiform seizures.
I think some of it has to be due to family issues - the mum is an aggressive personality who often just dumps her child in the ED, she refuses to allow treatment, has threatened and actually slapped nursing staff, shouts and screams unless they get ketamine infusion / fentanyl / IV potassium (but won't allow a mini 10mmol bag, it has to be the 30mmol in 1 L bag) etc and it's almost like a cry for attention from the child.
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u/ktbug1987 2d ago
So she’s come in because she self adminned epi at home before coming in? Which I guess they do tell you to do but still. Woof. Thats… not cheap. I can barely afford to keep my pen current and often am running around with one slightly expired.
I mean that will give you tachy right, taking a pen of adrenaline? I say as a person with an allergy who carries a pen but has only had to use it once, I don’t really ever want to have to ever again. It has been almost 20 years but I recall it being…. Deeply unpleasant.
It seems like something one wouldn’t do except in the real case of suspected anaphylaxis or as a very serious type of self- (or I suppose mom-) harm.
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u/Hour-Palpitation-581 Physician 2d ago
Is she safe at home? The CNN report had a sleep specialist who mentioned benzos are becoming more common than GHB.
Also, this literally is a cry for help. Yes.Also: anaphylaxis is always subjective until it's suddenly not, and suddenly not is at the point of intubation and needing pressors. If they really think they are having anaphylaxis, treat with epi IM.
Source: allergy/immunology, we personally treat anaphylaxis multiple times a month and also care for rare diseases like autoinflammatory syndromes. Just because some physicians don't understand something or know how to treat it doesn't mean it's not real.
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
...who is giving her adrenaline to self administer?
You can't do anything for this person when there's another physician already undermining anything you say/do for them.
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u/Svetakgb ED Attending 1d ago edited 1d ago
It is not the “cases” that are difficult per se. It is generally the patients’ behavior. They are often rude, entitled, demanding and sometimes downright belligerent that we can “fix” them. It gets old to be disrespected so frequently. And furthermore, you are in an emergency medicine thread.
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u/heyinternetman EM/CCM/EMS Attending 2d ago
All these diseases are bullshit. It’s just borderline personality disorder.
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u/LeVoPhEdInFuSiOn RN - Phone Bitch (Telehealth Triage) 2d ago
Technically the conditions are not bullshit but they're easy to fake due to murky dx criteria, a criteria of exclusion for other differential dx, and social media communities treating these conditions as a social identity.
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u/tea-sipper42 junior ED doc (Aotearoa NZ) 2d ago
Important to remember that all of these diseases are real, significant medical conditions with serious complications. Unfortunately the unifying factor for these conditioms is that they all either a) have diagnostic criteria that are vague/murky enough to apply them to pretty much anyone if you try, or b) can easily develop secondary to other things. Eg if you're bedbound for a week or so, you're probably going to develop POTS. If you're underweight or even just on the skinnier side of normal, you can develop POTS. If you have an eating disorder, you have a significant chance of developing secondary gastroparesis.
Thus, people struggling with medically unexplained symptoms end up either getting diagnosed with these conditions or self-diagnosing. Then negative interactions with health professionals + a feeling of helplessness (my suffering is due to this chronic condition, the condition is incurable, therefore my suffering is incurable) drives the cycle.
Their suffering is very real. The conditions are very real. It's just that in this specific patient population, the conditions aren't the cause of the suffering.
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u/Bikesexualmedic 2d ago
This is maybe the best and kindest reply I’ve seen in the last few years. Nice work.
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u/AwareMention Physician 2d ago
It doesn't have to be kind. It's reality, these problems will never be solved if they are not acknowledged for what they are. Nociplastic pain is a thing. You can pretend it's not, and keep practicing like it's not, but the patients will still exist and keep suffering.
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u/YoungSerious ED Attending 2d ago
It doesn't help at all that the trend on social media is for every other area remotely approximating medicine tries to shit on doctors and breed mistrust to market their own stuff to patients. I see video after video of PTs, NPs, naturopaths, chiropractors, "spiritual healers" and more mocking bad experiences a patient had with a doctor and how they can "actually" help.
This is the rhetoric that hurts patients the most because it pushes them further away from medical treatment that some of them genuinely really need, and convinces them that they need some bullshit they are being up charged for, by a quack that didn't study any actual studies or papers, is peddling to make money.
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u/ExtremisEleven ED Resident 2d ago
This is fair. The number of residents I saw quietly develop syncopal episodes was interesting. It’s absolutely sometimes stress induced. The difference is they treated it with compression stockings, electrolytes, exercise and avoiding caffeine. They didn’t show up to the ER and make a big show about demanding specific, harmful interventions.
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u/Every_Cantaloupe_967 2d ago
This is insightful and shows you actually have experience working with this group.
They’re annoying as hell on shift but every time I meet them I thank my lucky stars I don’t have their life. Because it’s bloody hard whatever they’re going through.
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u/purpleelephant77 1d ago edited 1d ago
I was severely anorexic in teens - early 20s and so many people I met in treatment over the years who I never bothered to unfollow on instagram or whatever suddenly develop POTS/EDS/gastroparesis when they hit their mid-late 20s and their families start setting boundaries and giving ultimatums. They were usually the ones who seemed to love being in treatment, playing the “whose the sickest game” and just had no interests outside of being anorexic.
Having an eating disorder makes you feel like shit and I did permanently damage my body (the first time i saw my new pcp she was like “wait for real” when she saw that I have osteoporosis as a 29 year old black man) but the solution treating the eating disorder, not pretending that the problems the ED is causing are some unrelated organic medical issue.
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u/Daleeeeeeeeeee 2d ago
being out of shape isnt POTS
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u/nytnaltx Physician Assistant 2d ago
Eh it’s pretty much the same thing physiologically. Deconditioning, autonomic dysfunction affecting the circulatory system, etc
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u/Cautious-Extreme2839 Anaesthetics/ICU 2d ago
If only. Annoyingly these are real (but rare) illnesses and the patients who actually have them are getting really fucked over.
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u/heyinternetman EM/CCM/EMS Attending 2d ago
Connective tissue laxity disorders that created the whole EDS category are 100% real. But thanks to the angsty teens cruising TikTok, they even call it “the trendy bendy” themselves, I’d be welling to bet it’s <1:10,000 people who have EDS on their chart that actually have a true connective tissue disorder. Making the diagnosis of EDS bullshit. Time for a name change. If neurology can rename PNES every 6 weeks, so can the EDS folks.
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u/jnn045 2d ago
hypemobile eds is the only one without confirmatory genetic testing. all the other types have a definitive test. if you see a patient with vascular eds in the ED with an aortic dissection, i assure you it isn’t bullshit.
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u/E5D5 PEM Attending 2d ago
saw a pediatric patient (~7 yo) with genetically confirmed classic EDS. poor thing. her skin really was like velvet and she had scars everywhere. She was constantly injuring herself and was constantly bombarded with tests to make sure her organs weren’t exploding. it sure as heck wasn’t bullshit.
the rest of the EDS i see? jury is out
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u/instasquid Paramedic - Australia 2d ago
There's a teenage boy in my community that often presents with alternating patellar dislocations. He's hopefully in the final phase of an EDS diagnosis the poor kid. I'm not sure what the treatment will be.
The current endorsed treatment plan is drugging him to his eyeballs and then his father extends the joint and prays for relocation. Success rate of about 98% but it feels like we're torturing the young fella.
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u/tea-sipper42 junior ED doc (Aotearoa NZ) 1d ago
One of my colleagues saw a hEDS patient with well-documented recurrent joint dislocations, including dislocating a native hip joint while getting off a bike. That patient also had mitral regurg and an unusual hernia.
It's a real disease 😭 But that's not what we're seeing in ED 99.99% of the time
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u/heyinternetman EM/CCM/EMS Attending 2d ago
No love for the chronic Lyme folks? Or have they been cured and moved on to EDS now?
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u/DispoAndDeploy Physician Assistant 2d ago
They come out of the womb wearing Cookie Monster pajama pants
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u/Silver-Bake-7474 1d ago
It depends on the source of the chemical mediators releases. If its a histamine issue (itching/hive/flush/neuro agitation/brain fog) H1 and H2 are the way to go but its temporary for some. Singulair for throat swelling and others. Cox1 or Cox-2 meds for prostaglandins. Then there are some with paradoxical reactions reactions to benadryl (which non MCAS people can encounter ad you know). Is it complicated? Yes. Is it a game? Yes.
The next batch of things that would be extremely helpful for most people would be a selective BTK inhibitor.
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u/PlatypusHour212 2d ago
Recently took care of a very nice MCAS lady having an allergic reaction but was allergic to epinephrine prednisone Benadryl, Zyrtec, Pepcid. Could only take Loratadine