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For Those With Facial Flushing...


valliali
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how severe is it? does it burn? how red is it? like more pink than usual or fire engine red? how long does it last? what are the triggers?

and has anyone had a doctor offer an explanation for it other than a mast cell problem? can it be explained by autonomic dysfunction in itself?

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I am always very pink during the day, everyone comments on my rosy cheeks. When I flush, it looks like a BAD sunburn on my face and down my neck, if it really bad it will go 1/2 way down my chest. The heat, that I feel, is proportionate to the flush (like a blush just bigger.) I have seen notations in articles on MCAD and POTS where there are some POTS patients that flush but do not have MCAD. They are not sure of the reason, but two theories are a dopamine reaction and localized vasodilation (like vasomotor rhinitis.) Hope this helps.

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thanks for your response! do you know if flushing without mcad is pretty rare in POTS? also, is it true that mcad is very difficult to diagnose? i have had very extensive mastocytosis tests, and been told that my mast cells/histamine are all clear. do those tests also test mcad?

this flushing is maddening. it seems very much like rosacea. except for a few bizarre things. it came on super suddenly, with no history of flushing/blushing at all. and it became very intense, very very quickly. with something like rosacea, it usually strikes a person who has had years of easy flushing or blushing, and it develops gradually, sometimes over decades. mine was over the course of a couple of months, and then i was faced with a burning red malar region for ten hours or more. it is related to a temperature change only, meaning i only get the flush when my body temp is coldish, then becomes warmish. so, for example, if i am in sweatshirt weather, my body temp is usually around 97 degrees. if i am in sweatshirt weather for a little while, then move into t-shirt weather, my body temp will shoot up to around 99 degrees, within minutes, and i'll turn burning red and hot. this lasts for HOURS!!!!!!! again, that seems to fit a trigger of rosacea, but i don't know about the sudden body temp change.

most of my doctors have no idea what is going on. some of them it sounds like it could be something like rosacea, others have said no. so i went to a derm in my city who was recommended on the rosacea forum, and he told me i absolutely don't have rosacea, and actually made me feel like a total idiot for even considering i did. he said it is clearly an autonomic nervous system dysfunction.

however, i don't quite understand how he can say this. how is it so clear? do others with ANS dysfunction flush for ten hours with a bright red burning pain? is that a normal symptom? i often see flushing listed as a symptom, but this can mean so many things. this can mean a thirty second hot flash type of flush, or a ten hour flush. these are very very very different. i don't really hear too much about people experiencing the same kind of thing i do.

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Here is how I see it. We have compromised autonomic systems. There fore heating and cooling doesn't work right. The increase in activity for us is enough to either make breathe more heavily, get red in face, increase hr. And for those with mastocytosis thats just it saying "hey ya'all" it is part of who we are. I think that when we try to pinpoint reasons for some of the symptoms that are part of one or more of our dysorders is possibly increasing anxiety. It did for me. So here is my 2 cents worth. M

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I've been in total face/neck/chest flush mode at my POTS docs office and he'll just give me a smile and say, "Wow, the adrenaline's flowing today". For what reason, who knows. Temp change, standing too long, too many carbs, etc., etc. Trying to figure out exacly the cause (when even my docs couldn't) used to drive me mad. Now I just try to deal with it the best I can (and it's gotten much better over time).

Here's some interesting info on rosacea - http://www.internationalrosaceafoundation.org/symptoms.php4

Even though I don't have it, I think there's definitely a cross-over/overlap with my POTS flushing.

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Hi,

I am not sure of all the causes of facial flushing, although I do believe there are many. The differ though in where the redness occurs, for how long, how quick came on, what you were doing (cause of flushing), hives present, itchy rash... etc... So, not all is necesarily MCAD with POTS, but for some people it may be a cause. Other things to look at are stress, allergies, strong emotional response, adrenaline surge etc...

I am not entirely sure of the cause and what you actually define it as, but I have known people (I can think of one professor in general) that I noticed that flushed frequently with a rashy, almost hive-like flush over all of her face, neck, and upper chest. She would get it immediately upon standing up in front of our class of 40 people. It was a daily thing... if she was teaching, she had this flushed/rashy thing going on. She has been a professor for a while, and did this even after knowing us a couple years. But, I do think it was related to anxiety and an adrenaline response to being up there in front of us teaching. So, I could see where people with dysautonomia could have a like reaction with adrenaline surges and increased anxiety(from surge and other symptoms) etc.

Not sure if my rambling helps? :D

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I've been in total face/neck/chest flush mode at my POTS docs office and he'll just give me a smile and say, "Wow, the adrenaline's flowing today". For what reason, who knows. Temp change, standing too long, too many carbs, etc., etc. Trying to figure out exacly the cause (when even my docs couldn't) used to drive me mad. Now I just try to deal with it the best I can (and it's gotten much better over time).

I think mine is related to adrenaline. With my flushing (my cheeks get bright red but my whole head, neck and chest are pink), my hands and feet get cold and pale and sweaty. I know my norepinephrine levels are high with orthostatic stress, and it seems the more my sympathetic nervous system kicks in the more I flush.

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thank you all very much. it is comforting to know i am not alone. i know the flushing is not what will kill me, and that it is part of who i am now, but it is incredibly disfiguring to me. and there is absolutely nothing that can rid me of the anxiety i feel about it happening. i am very conscious about the way i look, and unless i redo my entire upbringing and the last 25 years of my life, then the flushing is just absolutely going to devastate me as long as it is happening.

that is why i am so focused on finding the cause --- because i have to find a solution, or a way to tame it. inderal helps me a great deal, but i can't rely on that forever. i need a more sustainable solution.

also, i think it is important for me to search for causes because i don't have a diagnosis. i know that i have autonomic dysfunction. but i technically don't have POTS. my official diagnosis is a "CFS-POTS-like syndrome." so, as long as i don't have a diagnosis, and doctors don't understand what is going on with me, then i can't work towards any kind of solution. and the flushing, being my first symptom and one of the most drastic physiological changes i have experience, i believe can point to a major key in this puzzle. plus, finding out whether or not flushing is caused by blood vessel damage (as in rosacea) versus mast cells in MCAD is a HUGE difference with very different treatments. but both can be treated to a great extent. so, i appreciate everyone's advice to accept this as it clearly causes great anxiety, and you are totally right in acceptance is a huge part of coping with this entire illness, but i also felt like i needed to explain why i am centered on finding "the cause," or at least a diagnosis, though i know i may never will!

again, thank you all for sharing your stories with me. you must be very very strong and confident to be able to accept the flushing!!!

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