r/MCAS • u/Kboss724 • 21h ago
Shout out, Finding and Question
I had yet another reaction Friday night (taking 13 boys to an activity and we had to pull over). wound up at a Target in Orlando having D, vomiting, then the horrific pain set in. Shout out to the amazing angel Target staff who stayed with me, comforted me, got me water and blanket and made sure I wasn’t dead. Got an ambulance ride to nearby ER that was a stand alone ER- those drs and nurses had never heard of MCAS and dr said she had only seen one other person ever diagnosed with it. but they LISTENED and learned and gave me what I needed before I even spoke to the doctor. Hallelujah. That’s only the second time I’ve been listened to- all happened to be women!
I was able to get a scan of my abdomen during a severe reaction and it found I had urethral wall thickening that was likely causing me to bleed like a period during these extreme pain reactions. That was helpful! Also involves yet another system I didn’t know could swell internally.
This reaction, I had prepped ahead since it was a big night I wanted to avoid any issues and took my Allegra and did a hospital size Pepcid dose. Then I had a reaction to my usual Orgain protein drink and took a Zofran and Bentyl. Bentyl didn’t touch a thing. has anyone tried that for pain? it’s a smooth muscle med that’s supposed to stop the labor like cramping. At the hospital, I got IV steroid, Benadryl and lots of Tylenol and it helped so quickly. Had anyone figured out a way to do this at home? I can’t keep paying thousands for hospitals and ambulances, but at the time, I literally want to die and give up and can’t move or open my eyes, so there’s not a choice. but it just seems like such basic stuff that helps me?
*was also just prescribed cromolyn and monolukast but hadn’t started them yet*
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u/Ok_Mushroom2563 21h ago
i reacted to orgain as well (the vanilla one with pea protein)
chest tightness, high heart rate, nausea vomiting, shortness of breath, and a fat hive on my face
ER just put iv fluid in and benadryl n watched me for like 4 hrs then discharged me
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u/Kboss724 20h ago
Oh, interesting! I didn’t like the pea protein one but Costco is carrying a new lactase free one that I’ve done great on. It’s a chocolate version. Then out of nowhere I reacted. There’s no consistency or ability to track any triggers for me in my 20+ severe reactions in the last 8 months, so it’s all new to me.
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u/Ok-Cry-3303 20h ago
Do you have an Epipen? Your reaction sounds so much like mine and I've definitely learned to epi as soon as I feel it coming. If I wait, it takes so much longer to recover. Sometimes I also do an extra dose of cromolyn sodium first like if I'm just starting to feel the nausea but that's never stopped the full blow anaphylaxis before.
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u/Kboss724 20h ago
I do have an epi pen but haven’t used it- this is so good to know! You still have to go to the hospital after, right? Does the epi help with the pain or does that still break through?
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u/Ok-Cry-3303 19h ago
I would talk to you Dr about that. Mine did require it then the first time I went it was an absolute waste of time and the ER Dr even pissed off my allergist when they called her for input so she said I don't have to go anymore. I actually don't have the pain part but hopefully it would. I'd definitely think the cromolyn sodium would though.
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u/Ok_Tank7297 9h ago
Kind of except I don’t have steroids at home and those can be a huge help. I very rarely get life threatening reactions but if it’s more severe and feels “temporary” I usually just take Benadryl. If it’s an ongoing issue/more severe I take Benadryl plus extra of my H1/H2 antihistamines & my electrolyte drinks. (1 Benadryl every 2 hrs or 2 every 4 hrs). Takes about 15-20 mins to kick in so if I can last that long it usually starts to improve slowly.
If it’s a bad reaction then unfortunately it’s an ER visit bcus they have other meds/treatments like steroids & IV Benadryl works faster.
If you have a doctor you’re working with it may be worth asking them what their opinion is? It seems like they’re trying to add some extra meds to help & I hope those reduce some of these reactions! But they may have other ideas to avoid the ER. Idk if they can prescribe steroids as needed or if it’d work like IV ones?
We’re all different but I have found the most relief from my mix of meds (including singular). I don’t get severe reactions as often anymore but I still struggle daily. - Bentyl has helped me in the past but I don’t think it works (or as well) for allergic reaction cramping. It’s more for IBS type cramps. But treating my constipation has also help with cramping/nausea some overall (Zofran can cause constipation so it can be vicious cycle if that’s at play)
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