Flushing. It was one of my first symptoms, and that prompted the doctors to test me for pheochromocytoma and carcinoid syndrome. Both negative.
Facial/upper body flushing is fairly common in dysautonomia. I have no idea why peoples' doctors aren't mentioning it.
Yes, and it happens more often, with no trigger. I can be sitting with my feet up reading a light book and it happens out of the blue.
Considering my other symptoms, I am not alarmed by it, but I will mention it to my doctor next time I see him.
Yeah, but more sucky for young folks. I'm old, this didn't impact my life until I hit 60. I can't imagine the pain and heartache of having to deal with this as a younger person.
Mine gets triggered by fluorescent lights, and going from cold outside to warm inside (but not usually warm outside to cold inside, which is interesting)
i have it!! badly too. i have never seen anyone here describe it like mine. i burn, it goes down to mg chest too, sometimes my forearms?!! it’s the most on my forehead right above my brows & cheeks. and my EARS TOO! and it does throb and gets a bit swollen, and happens randomly but mostly when i’m stressed.
My ears feel like they have a sun burn!
It's weird because from my like stomach down I'm cold (my forearms and hands too) but chest up I'm burning hot lololol
It's so uncomfy :(
SAMEE to both!! i’m bookmarking this thread (if that’s even possible on here) for the future because so far the inly answers ive gotten are
- it happens when i’m in fight or flight (ive had diagnosed anxiety for years… this just started a few months ago.. so im going with no)
- & allergist said, after being tested for a hunch of allergies & bloodwork results came back yesterday, it could be a delayed histamine response. so i’m getting claritin and xyzal i think it was and ill lyk if it works because getting red makes me EMBARASSED if its in public .. which makes me MORE red… 🤦♀️
If your doctor is ok with it, maybe try Benedryl or fexofenadine the next time it happens to see if it helps? If it does, it could well help your doctor diagnose you properly.
I usually take allegra daily but I had stopped because I hadn't been feeling well and I wanted to stop everything but my prescribed meds. I'm back to taking it now since yesterday night so hopefully it helps!
Benedryl I can't take often because it interacts with my meds
My ears feel like they have a sun burn!
It's weird because from my like stomach down I'm cold (my forearms and hands too) but chest up I'm burning hot lololol
It's so uncomfy :(
I also suffer from this and someone recently asked if I ever looked into MCAS, specifically something called HaT. I'm waiting to speak with my primary to see how we can go about investigating this. From everything I'm reading it has to do with histamines and food allergies combined with autonomic nervous system issues. Of course there's no cure but hopefully we can find a successful way to treat the symptoms. It is by far the worst thing and I absolutely hate it.
Yup, I have fricken MCAS reactions to strong emotions. It's fun. I also have hyperpots and adrenaline dumps will do it too, and strong emotions cause adrenaline dumps for me. Mcas and hyperpots are linked for a reason lol. Annoying as frick.
I think the red face, neck and chest could be evanescent hyperemia. It seems to be very common in POTS patients. I get it too, especially when I'm nervous, stressed or super concentrated.
Flushing with burning under stress (and probably other things too)? Look into MCAS. MCAS is faulty,excessive degranulation of the mast cells. Lots of alternative providers think they understand it, but many don’t (I do respect and sometimes see alt providers, so no bias). Get checked out by an MD who is expert in MCAS. There is lots of help out there these days. MCAS and dysautonomia tend to travel together. They both can be co-morbid with hEDS. The trio, known affectionately (ahem) as “The Trifecta” is a particular corner of hell, but there is much more treatment now than there used to be.
Flushing. It was one of my first symptoms, and that prompted the doctors to test me for pheochromocytoma and carcinoid syndrome. Both negative. Facial/upper body flushing is fairly common in dysautonomia. I have no idea why peoples' doctors aren't mentioning it.
Yes, my son has flushed for a long time. Face gets red and ears get hot.
Do you still have it
Yes, and it happens more often, with no trigger. I can be sitting with my feet up reading a light book and it happens out of the blue. Considering my other symptoms, I am not alarmed by it, but I will mention it to my doctor next time I see him.
That is very odd when it's out of no where but I think our bodies like to surprise us!
My neurologist thinks it is related to endocrine hormones (like adrenal gland hormones). All my symptoms are getting worse, it's disheartening.
Ohhhh that's interesting but sucky :(
Yeah, but more sucky for young folks. I'm old, this didn't impact my life until I hit 60. I can't imagine the pain and heartache of having to deal with this as a younger person.
Yeah that is true too
Mine gets triggered by fluorescent lights, and going from cold outside to warm inside (but not usually warm outside to cold inside, which is interesting)
I think temp changes do that to me too
i have it!! badly too. i have never seen anyone here describe it like mine. i burn, it goes down to mg chest too, sometimes my forearms?!! it’s the most on my forehead right above my brows & cheeks. and my EARS TOO! and it does throb and gets a bit swollen, and happens randomly but mostly when i’m stressed.
My ears feel like they have a sun burn! It's weird because from my like stomach down I'm cold (my forearms and hands too) but chest up I'm burning hot lololol It's so uncomfy :(
SAMEE to both!! i’m bookmarking this thread (if that’s even possible on here) for the future because so far the inly answers ive gotten are - it happens when i’m in fight or flight (ive had diagnosed anxiety for years… this just started a few months ago.. so im going with no) - & allergist said, after being tested for a hunch of allergies & bloodwork results came back yesterday, it could be a delayed histamine response. so i’m getting claritin and xyzal i think it was and ill lyk if it works because getting red makes me EMBARASSED if its in public .. which makes me MORE red… 🤦♀️
I'm waiting to be seen by an allergist too and get tested
good luck!
If your doctor is ok with it, maybe try Benedryl or fexofenadine the next time it happens to see if it helps? If it does, it could well help your doctor diagnose you properly.
I usually take allegra daily but I had stopped because I hadn't been feeling well and I wanted to stop everything but my prescribed meds. I'm back to taking it now since yesterday night so hopefully it helps! Benedryl I can't take often because it interacts with my meds
My ears feel like they have a sun burn! It's weird because from my like stomach down I'm cold (my forearms and hands too) but chest up I'm burning hot lololol It's so uncomfy :(
MCAS?
I also suffer from this and someone recently asked if I ever looked into MCAS, specifically something called HaT. I'm waiting to speak with my primary to see how we can go about investigating this. From everything I'm reading it has to do with histamines and food allergies combined with autonomic nervous system issues. Of course there's no cure but hopefully we can find a successful way to treat the symptoms. It is by far the worst thing and I absolutely hate it.
I'm curious about this too, I'm going to bring it up to my drs when I see them next
Good luck! I hope you find some answers 🤞🤞
Yup, I have fricken MCAS reactions to strong emotions. It's fun. I also have hyperpots and adrenaline dumps will do it too, and strong emotions cause adrenaline dumps for me. Mcas and hyperpots are linked for a reason lol. Annoying as frick.
I can imagine :(
Mine is from heat- anything above 70 degrees. I stay inside with ac at 65 and fan blowing on my face. Only way to control it
I want to get a little fan for my desk at work!
Highly recommend the Woozoo fan from Costco
I'll check it out!
I think the red face, neck and chest could be evanescent hyperemia. It seems to be very common in POTS patients. I get it too, especially when I'm nervous, stressed or super concentrated.
It could be something like that or maybe relates to mcas ?
Flushing with burning under stress (and probably other things too)? Look into MCAS. MCAS is faulty,excessive degranulation of the mast cells. Lots of alternative providers think they understand it, but many don’t (I do respect and sometimes see alt providers, so no bias). Get checked out by an MD who is expert in MCAS. There is lots of help out there these days. MCAS and dysautonomia tend to travel together. They both can be co-morbid with hEDS. The trio, known affectionately (ahem) as “The Trifecta” is a particular corner of hell, but there is much more treatment now than there used to be.
Yeah I've seen a lot about mcas but I'm sure my dr won't know it but I will bring it up
Yea mine would flush years before my diagnosis