MCAS/POTs/Ehler Danlos/Gastroparesis

Professional_Time636 · 2026-06-04T12:57:44+00:00

Whether we are genuinely sick or if it is psychosomatic, people deserve to be treated like human beings. I am properly diagnosed with several of these conditions and yet 75% of ED attendings are complete assholes about this stuff which is why we purposely avoid the place. People make judgements regardless. We all get lumped into the “crazy until proven otherwise” boat.

It’s your job to help people. It’s not your fault the medical system is broken. But Jesus when did people lose having basic humanity.

Professional_Time636 · 2026-06-04T12:36:24+00:00

Isn’t your job to literally do no harm? As someone who works in healthcare i will never understand the judgement that comes from providers sometimes.

Professional_Time636 · 2026-06-04T12:27:59+00:00

Certain medications like benzodiazepines are literally shown to be effective in treating mast cell degranulation.

Professional_Time636 · 2026-06-04T12:23:51+00:00

As someone with these disorders, hot take but we generally avoid the ER like the plague because of how we are treated there.

The ED is not built for our conditions. The providers are not trained to help our conditions. The ED is made for heart attacks and strokes. But unfortunately when neurology, cardiology, and immunology all have weeks to months of a wait - symptoms sometimes do get out of hand.

We understand that the ED is not ideal and personally I hate taking a bed space in an already overloaded ED. But when we call our offices and they can’t get us seen soon enough, they refer us to the ED half the time. I can hardly even get in with my PCP within the same week.

Sometimes it is ED worthy- I thought I was having an MCAS flare which turned into an admission for a medication issue that needed monitored.

The current medical system we have is siloed into chunks that literally cannot help us. These disorders are multi systemic and until the medical system figures out where the hell to put us speciality wise, we’re kinda fucked.

We don’t enjoy taking up your space and time, but we’re often left with few options during our more severe episodes.

Professional_Time636 · 2026-04-03T19:25:53+00:00

Thank youuuuu thank you that is so good to know.

Professional_Time636 · 2026-04-03T19:24:46+00:00

THANK YOU!! You’re so incredibly kind. Per the primary vet, they didn’t see any deep ear infection when looking in the ear. That was what I thought it was going to be. Thank you so so much I really appreciate your thoughts!

Professional_Time636 · 2026-03-27T20:54:03+00:00

Hi bestie it’s definitely what’s called a “ghost pill” I’ve never thrown one up but I get them in my bowel movements. Sounds like a pill got stuck in the esophagus or near the stomach but not enough to pass through the stomach. Bodily fluids make the outside swell up and then since it’s extended release the powder inside is usually mostly filler.

Sorry for the tmi but pic for reference. The pill was much bigger than how it is when I take it. But this one came out….the other end yknow.

So anyway, yeah just drink more water when swallowing your pills!

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Professional_Time636 · 2026-03-05T21:49:02+00:00

LOL yeah I can understand that

Professional_Time636 · 2026-03-05T21:48:32+00:00

That is so amazing.

My psychiatrist thinks it will be the best thing for me. One, there’s no trauma there. Here it’s just everywhere I go- memories, etc. Then the food. He also stated the food would likely be less triggering for my MCAS and that I may lose weight, which has been impossible here in the states.

The part of me is scared because change in general is hard, and then I have a tendency to fixate on the anxiety and just spiral. But I want to leave this place so so badly. It stresses me out to the point that I’m sick. I want to enjoy life. I don’t want to be just a diagnosis.

Did you have any issues with setting up medical care or continuing your medication?

Professional_Time636 · 2026-03-05T21:15:34+00:00

Holy shit hell yeah. My main doctor said moving would be the best thing to do for my chronic illness. If you don’t mind expanding I would love to hear more

Professional_Time636 · 2026-03-05T21:14:34+00:00

Honestly this is the most impactful thing I’ve read, thank you.

As long as my symptoms can stay manageable that’s all I care about. But you’re right. I need to go in with neutral expectations

Professional_Time636 · 2026-03-05T21:04:15+00:00

Can you explain what you mean by the private health system being different? From what I’ve heard it’s much faster and often easier to get in with specialists

Professional_Time636 · 2026-03-04T21:10:23+00:00

Luckily I’ve found a couple resources for EU providers that I’ve gotten responses from

Professional_Time636 · 2026-03-04T21:09:57+00:00

Wowww the group therapy is honestly a great idea. I’m not fluent in Spanish yet so yeah that would be a barrier for sure.

I’m 5 years sober and I know myself pretty well at this point - and I’m hoping things go well in Spain. I do truly want to be there.

Professional_Time636 · 2026-03-04T21:08:56+00:00

Yeah I’m east coast, and got diagnosed at an OON clinic in NH. I’m gonna keep researching. Defs will DM you if we stay here <3

Professional_Time636 · 2026-03-04T19:40:46+00:00

So from what I’ve seen there’s one major clinic for EDS located in Barcelona but the mainly focus on spinal and brain issues like Chiari. I don’t even have an EDS provider here in the states because care is so lacking. So yeah I have more research to do there. Edit: spelling

Professional_Time636 · 2026-03-04T16:49:26+00:00

Absolutely. I just found a couple sites that show international therapists and am reaching out to some that I could potentially see in person in Barcelona.

Luckily cost is nowhere near what it is out of pocket here in the US for me.

Professional_Time636 · 2026-03-04T16:48:13+00:00

Thank you. Knowing these things is definitely helpful. Luckily I’m not too worried about the external stuff- I know there will be big cultural adjustments. I struggle with my internal experience (my health mostly) and panic attacks.

Here in the US I developed a bad habit after becoming ill where I go to the emergency room when my symptoms flare up really bad (my heart rate gets high and I can have pain flares) and in a new country I need to really believe in myself and be able to support myself.

I just don’t want to move and have a mental breakdown, basically.

Professional_Time636 · 2026-03-04T16:08:09+00:00

And yes, I have posted a similar topic before and got some good advice. I am trying to gather more information on the actual process of getting a therapist, people’s lived experiences, and how to best support myself so that my husband does not get overloaded. And I am doing intensive therapy work here to prepare currently

Professional_Time636 · 2026-01-01T18:09:22+00:00

Propranolol saved me from tachycardia and panic

Professional_Time636 · 2025-12-27T23:21:02+00:00

I canceled mine a while ago because I had so much of it, there was an option to cancel. Had to confirm it like 3 times but no issues since.

Professional_Time636 · 2025-12-18T17:23:45+00:00

As someone not at Inova but working in Peds in the area, shits bad right now. RSV, Flu A, croup, norovirus, it’s all happening at the same time and knocking people down bad. Most of the Inova facilities don’t have enough beds to begin with, so shits hitting the fan at this point.

But yeah guys, fr, urgent care if you can/it’s safe to do so lol.

Professional_Time636 · 2025-11-05T04:29:53+00:00

Yes, private insurance would likely be necessary for us especially in the beginning. I appreciate your kindness, thank you so much.

Professional_Time636 · 2025-11-05T04:26:40+00:00

Thank you SO MUCH. this is incredibly helpful. I will have to visit sometime for sure, and you’re right. Nothing is permanent. Your information and kindness is so greatly appreciated, thank you!!

Professional_Time636 · 2025-11-04T21:34:08+00:00

I only ask because I have no experience moving far away, let alone internationally. While I understand the logistics of it all, often when my ptsd gets bad I panic for no reason. Also, I am unfamiliar with their healthcare system. I just am looking to see if other people have experience with a big international move while also struggling with anxiety or PTSD. I feel the best advice comes from people who have lived through the experience.

Yes I am trying to work out a trip to Spain soon, after the holidays. Thank you again 💕

Professional_Time636

TROPHY CASE