sorry guys - i know i keep posting on the same topic, but you never know when new information has surfaced or some of the new members can offer some advice. so if you are tired of my facial flushing shpeel, please ignore

ok, so my FIRST symptom over a year ago in this whole ordeal was facial flushing. i had never flushed before, was never kidded for blushing, etc. i had just returned from living in africa, and had been on the birth control pill for a couple months. the flushing was incredibly intense, with really strong hot flashes, so i attributed it to the pill and stopped taking it.

one year later, the all-the-time flushing has subsided, but i now experience really really intense flushing after long-time exposure to cold weather and then moving to warmer environs. so, in the winter, taking a hot shower will set off a flush, or entering a warm room after being outside. even now, when the mornings are a little cooler, i will flush when the temps rise. the flushing is bright bright red, will last for hours, and burn like crazy. it is extremely debilitating.

sounds like rosacea, right? all my doctors don't think so because i have no other triggers. not from drinking coffee (100% decaf, of course), not from embarassment or stress, not from spicy foods, etc etc. only the change in temps.

without an appropriate diagnosis for this, my insurance company will not provide treatment. so i am trying to get to the bottom of the flushing b/c i HAVE to treat it.

from my research, it seems like rosacea is the only condition to explain the hours-long intense burning flush. the crazy thing is that i went from never flushing to horrible flushing, very quickly. this seems uncommon with rosacea. i have also noticed that if i take a nap, for even 20 minutes, the flushing, which normally lasts 8 + hours, will subside dramatically. not sure if this can happen with rosacea, but it makes me wonder if there aren't neurotransmitters going haywire that stop communicating once someone sleeps? if that is the case, why do more dysautonomics not have flushing? and how could i test for this? and most importantly, treat it?

i have heard mast cell activation can trigger flushing, but like i said, i only experience it from cold to warm. it would seem unusual to me that this would be the only trigger for mast cells?

could i have a problem with my vasodilation? i have noticed that my body temp, usually around 96.5-97.0, will shoot up to around 99-100 during a flush? is this common with flushing? could this sudden rise in body temp be the CAUSE of flushing, or is it the result? what could cause this sudden increase in body temp?? is it related to neurotransmitters that send signals to the hypothalamus?



i apologize that this is so long, i am ranting. as you can tell, this symptom is making me crazy. i just want to get some answers, but my insurance company is being difficult as a result of all these varying opinions of doctors who think rosacea, carcinoid, pots, etc. anyone with a similar issue???

Have you had your hormone levels checked...when I was on the pill several years ago I would get extreme facial flushing from the neck up EVERY day - it felt like I was on fire...I called it my daily hormone surge.

which hormones? estrogen and fsh? i haven't had them checked, but i have been off the pill for about a year now. the flushing has persisted.

I had all hormone levels tested one time. You should ask your Dr if that could be a cause of the flushing.

hi i dont really hav n e info but I also suffer with severe facial flushing that no-one can seem to explain!
mine started about 2years ago when I first became ill with POTs and is so severe that I cannot sleep at night without a fan on my face and cannot go out without icepacks!
Hot showers/baths, entering warm rooms also trigger mine and make it worse. Ive had all my hormonal/adrenaline levels checked and they are all fine-and I came off my birth control pill 1 1/2 years ago and tthat seems to have nothing to do with it!
im only 20 and im going to have a sweat test in a few months but my docs dont seem to have any opinion at all (other than its related to POTs)!its ruining my life!
The flushing is specifically in my cheeks and ears and is an extreme burning sensation-im pretty positive mine is not rosacea!
did yours start with your POTs?

Gracie~

Boy do I understand your frustration. My flushing episodes are the one thing that keep the DRs wondering if I have a pheo or carcinoid. I have been scanned so many times and they have yet to find a tumor but the endo and GP think it is there. At this point I don't know so I will continue to have routine scans but am afraid it is all just a POTS thing. The only thing that I have found that has helped is that I take effexor. I don't know why it seems to help but when I started taking it the flushing got less entense and over the first few weeks it slowed down. I still have episodes if I am exposed to heat/sun but it is not as bad. Good luck finding answers and I hope you can get your flushing under control.
Wendy~

tazaza - yes, mine started with pots. actually, it was my first symptom. i vividly remember the exact moment that i felt the wierdest sensation in my face, and after looking in the mirror, realized that it was red. i had never flushed or blushed before in my life. for the next month, i was flushing and blushing at almost everything, and had no understanding as to what was going on. then, all the other symptoms started to come on, and i realized something was wrong.
the flushing has been very detrimental to my life too. my doctors all say no to rosacea, but the more i research it, the more it seems like what i have going on. however, i just can't shake that it started SO suddenly, and became really intense really fast. but, if it is rosacea, there are very specific ways to treat it, and it is difficult to know which way to go to seek treatment because of the differences in opinions.
i think mine is pots related, but i just don't know why. it would seem ironic to me that i would develop autonomic dysfunction AND rosacea at the same time, unless autonomic dysfunction can cause rosacea?

ms dino - my doctors also go between pheo and carcinoid all the time. in fact, i am taking in another 24 hour urine test today. i had slightly elevated serotonin levels previously, but nothing that concerns me. i really don't think i have those tumors, but it SURE seems like the flushing is related to a surge in neuropeptides. i would like to start on a ssri or snri (like effexor) because i have heard they stabilize blood vessels. but i know that the flushing won't stop until the chemicals are stopped.


thanks you guys.

jan p - if you read this, do you know if MAJOR facial flushing can be a sign of lyme?

I've had moments of intense flushing/face burning for years. It doesn't seem to happen as often to me though.

I've just about decided it was an autonomic response. I think they are, for me, and anxiety response. Too much of some chemical, like maybe adrenaline, being pumped into my system without cause. Although my heart doesn't beat really fast and I dont feel panicked at the time.

But maybe for some reason the body is pumping out the "blushing" hormone for no reason. Which would be an autonomic dysfunction.

eeyore

thanks, eeyore. it definitely seems like it is a chemical problem, but i think a lot of my "blushing" hormone - the epinephrine - is being controlled by the beta blockers. all my anxiety related flushing, which has never been much to begin with, is eliminated. i ONLY flush when i am cold, then warm, and my body temperature shoots up.

Don't know if you have seen this but found it an interesting read:

http://www.rosacea-ltd.com/flushing.php3

I found it when looking at something for my hubby, and thought of you.

thanks, rosie. i have read that article before, and many others on rosacea, and when i flush, it sure sounds like rosacea.
however, all my doctors say absolutely not because i do not have multiple, or even two, triggers, as many rosacea sufferers do. i also have NO history whatsoever of flushing. it came, literally, one day out of nowhere, and then shortly after i started getting sicker and sicker. it seems like it has to be related to whatever is going on with my ans.
being that you know a lot more than me on this, do you think that this could still be rosacea? should i treat it as rosacea? why would i have no other problems with flushing, like with heat, spicy foods, embarassment, alcohol, etc? also, why would it come on so suddenly?

thanks so much for thinking of me! this symptom is driving me crazy.

Hi Gracie,

I've posted to you on this subject before. Although I get flushing and burning in my extremeties and neck as well as face so experience differences from you I'd just thought I'd pass on the name of my condition -- Erythromelalgia. My pots doc believes it can come with pots. Not that he told me -- I read it in a report he wrote to another doc. Sigh...

If you haven't read about this condition before you might want to do a search on it.

Hi Gracie,

I seem to be in avery similar situation to you.
My burning is so severe that it stops me from going places/doing pretty much everything. It affects me almost 24hrs a day now and was also the first symptom I remember getting when I first became ill!
Did you ever have a sweat test?

The flushing, which I get down into my trunk and upper legs sometimes (starts with the face) has nothing to do with stress for me. I can have it and not know until I look in the mirror. Sometimes, my face feels hot. Anyway, it is called MAST CELL ACTIVATION and is associated with autonomic dysfunction. I have read a fair amount about it, because we always used to think it was related to my juvenile arthritis. I hear that antihistamines can help it. Seems to come in waves with me.

neshema - i have read about mast cell activation, and plan on being tested for abnormal mast cell levels, although i have also read that many pots people can have abnormal cells and not necessarily abnormal levels. however, i am not sure that this is what i am experiencing, considering my flushing is activated by an increase in my body temperature (usually a sudden increase from around 97 to 99.5-100 degrees). the flushing also is only on my nose and cheeks and BURNS. i believe mast cells can cause flushing elsewhere and is usually painless, with the exception for some itching. but thank you for the suggestion. i have looked into it and will request some H1 and H2 treatment to trial.

tazaza - i have not done a sweat test. am thinking about that as well. i thought i didn't have a problem with sweating, because i know i do for sure on my body, until i learned many pots people might only not sweat on their faces, hands and feet. my boyfriend pointed out to me that he has never seen me sweat on my face (we live in california - it was recently 115 degrees). so, perhaps this is a possibility. i also notice my body temp shoots up in the heat REALLY easily. however, i only flushing on my nose and cheeks.

blueskies - i will most definitely be researching this. i know you have mentioned your flushing before, and you said that yours can last hours too, right? do you treat it???? is Erythromelalgia another name for rosacea?


thank you guys! a co-worker actually pointed out to me that my flushing looked like the lupus butterfly rash. it is bright red, only on my nose and cheeks. i had an ANA test, which was negative, but am now wondering about lupus. i read a paper by dr. grubb which said that lupus can cause secondary pots. lupus might explain my swollen joints and lymph nodes. any thoughts???