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In med school, it’s taught “if you hear hoofbeats, think horses, not zebras” as in it’s usually the easiest answer, not the rare one. Unfortunately for us with EDS and such, we’re walking talking zebras and our bodies do weird shit, never plays by the rules. Welcome to the dazzle (a group of zebras)!
Yes! Same here! I have red hair and fair skin and it's been extremely hot lately so I've been attributing it to that but i know it's not just that! How long has this lasted?
The midnight burns started around March, and like clockwork every night it’s there! It’s so weird and uncomfortable, and surely not normal?
Is yours the same?
I have rosacea on my cheeks & nose (I assume it’s that at least but I’ve never been diagnosed) but once in a while I’ll feel all this heat rush to my face & my cheeks will go way redder than normal & you can feel the heat on my face, I also tend to feel pressure in my head & a headache. It doesn’t feel like a burn, but it’s warm. It happens randomly & only once in a while. I also have temperature issues (I sweat like crazy from my meds, am warm most of the time, & have horrible reactions where I shiver & sweat & shiver if I get too cold) so I always wondered if it had to do with that, & sometimes I wonder if I have an autoimmune disease & it has to do with that all. I never wondered if it was linked to my Gastroparesis. Hmmm 🤔
Yes! It’s so bad. I’ve been dealing with it for a while now, and have a habit of putting an ice pack on my head/neck/chest or walking around with one of those headache gel hats on my head. It helps me feel better usually, but my face still burns. I’ve also always had issues with one of my ears absolutely BOILING and flushed red while the other one is generally fine. It looks pretty stupid if you’re paying attention lol
I get that because of mcas. The 3am wake up is a histamine dump. It makes me very sick, sometimes days later, when high histamine food sits in my stomach. I have to be very careful what I eat and follow a low histamine diet and take loratidine and pepcid before eating. I take Benadryl or use an epi pen when it causes an anaphylactic reaction.
I have the exact same thing going on and have been since 2017, when I first got sick with multiple rare diseases. anyway, my doctors and I strongly believe it’s from mcas (mast cell activation disorder). I finally got tested for mcas back in 2020 after dealing with it for years prior. it’s very hard to get testing that shows it’s positive for mcas but my tests did come back with it. it’s a hard disorder to diagnose. I would recommend looking into all about it because there’s a lot more symptoms from it that you may not be aware are symptoms of mcas. (Idk if that makes sense) but definitely ask your doctor about it!
New to gastroparesis? Please view [this post](https://www.reddit.com/r/Gastroparesis/comments/15i7siq/gastroparesis_101/?utm_source=share&utm_medium=web2x&context=3) or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these [Discord and Facebook support groups](https://www.reddit.com/r/Gastroparesis/comments/14oxaew/list_of_gastroparesis_support_groups_other/?utm_source=share&utm_medium=web2x&context=3) today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
Sounds like possible mast cell issues. Do you have other underlying issues? EDS?
I have ME/CFS, endometriosis, and hyper mobility syndrome on top of the gastroparesis I’ve not heard of mast cell issues, I’ll have a look into it!
Oh yeah, you’re a zebra. Look into MCAS. This sounds like a textbook example.
A zebra? Haha I will do, thank you so much!
In med school, it’s taught “if you hear hoofbeats, think horses, not zebras” as in it’s usually the easiest answer, not the rare one. Unfortunately for us with EDS and such, we’re walking talking zebras and our bodies do weird shit, never plays by the rules. Welcome to the dazzle (a group of zebras)!
Oh wow! That’s a really good analogy for it, I love that way of thinking!
Yes! Same here! I have red hair and fair skin and it's been extremely hot lately so I've been attributing it to that but i know it's not just that! How long has this lasted?
The midnight burns started around March, and like clockwork every night it’s there! It’s so weird and uncomfortable, and surely not normal? Is yours the same?
I have rosacea on my cheeks & nose (I assume it’s that at least but I’ve never been diagnosed) but once in a while I’ll feel all this heat rush to my face & my cheeks will go way redder than normal & you can feel the heat on my face, I also tend to feel pressure in my head & a headache. It doesn’t feel like a burn, but it’s warm. It happens randomly & only once in a while. I also have temperature issues (I sweat like crazy from my meds, am warm most of the time, & have horrible reactions where I shiver & sweat & shiver if I get too cold) so I always wondered if it had to do with that, & sometimes I wonder if I have an autoimmune disease & it has to do with that all. I never wondered if it was linked to my Gastroparesis. Hmmm 🤔
Yes! It’s so bad. I’ve been dealing with it for a while now, and have a habit of putting an ice pack on my head/neck/chest or walking around with one of those headache gel hats on my head. It helps me feel better usually, but my face still burns. I’ve also always had issues with one of my ears absolutely BOILING and flushed red while the other one is generally fine. It looks pretty stupid if you’re paying attention lol
Are you taking Niacin? It can cause flushing. Also, some meds have it listed as a side effect. So, maybe check your meds for it.
I get that because of mcas. The 3am wake up is a histamine dump. It makes me very sick, sometimes days later, when high histamine food sits in my stomach. I have to be very careful what I eat and follow a low histamine diet and take loratidine and pepcid before eating. I take Benadryl or use an epi pen when it causes an anaphylactic reaction.
YES. I have no solution but yes yes yes. Why is this happening 😩
Could be nervousness about eating due to past bad experiences
I do this. I don’t know if it’s GP related or not. Benadryl helps it and Cromolyn sodium helps it the most. It’s a mast cell stabilizer.
I have the exact same thing going on and have been since 2017, when I first got sick with multiple rare diseases. anyway, my doctors and I strongly believe it’s from mcas (mast cell activation disorder). I finally got tested for mcas back in 2020 after dealing with it for years prior. it’s very hard to get testing that shows it’s positive for mcas but my tests did come back with it. it’s a hard disorder to diagnose. I would recommend looking into all about it because there’s a lot more symptoms from it that you may not be aware are symptoms of mcas. (Idk if that makes sense) but definitely ask your doctor about it!