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Facial Flushing, Frustrated!


valliali
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hi all -

i just visited a dermatologist for the first time since i started flushing. he is recognized as the "top doc" in this city and came recommended on the rosacea site. just a recap, i don't know that i have rosacea, but i have really intense, bright red facial flushing that lasts hours. and burns like heck. it has been incredibly debilitating. i only flush when i am cold, then become warm. my body temp increases when this happens by a couple degrees, at least. i have had to give up soooo much because of the flushing. i can no longer enjoy my favorite winter activities, and i have had to put to rest my dream of working with wild animals (which would involve being outside in all kinds of temperatures). these things were very very important to me. plus, even worse, the flushing has made me super socially anxious. when i feel my face is red-hot, i can not look at anyone, talk to anyone, or basically function. i hate the flushing sooooo much. it is really unbearable to me.

so anyways, i don't know if this is rosacea or not. but it doesn't really matter what it is. it is debilitating.

so, i finally went and saw a dermatologist. after educating myself about rosacea, flushing, blood vessel damage, etc. i felt like i would be a good candidate for some laser treatment. i joined the rosacea forum, where i have read many many stories of people like me - only flushing; not having the acne like bumps that many people associate with rosacea. many of them have had wonderful results from laser. the reason is because every single time a flusher flushes, blood vessels are damaged, and more are formed. then, the next time that person flushes, the damaged blood vessels get some blood in them, but so do the new ones. then those new ones become damaged, and more are formed. so a person with rosacea, for example, ends up creating many new blood vessels. when you have a ton of blood vessels, obviously that is more room for blood to go, hence more redness and burning. it is a vicious cycle. given my major flushes, i think it is safe to assume that rosacea or not, i am going through the same process. so i went to the derm.

my dermatologist completely writ me off. he kept saying that it's clear i don't have rosacea because i have no inflammation and because i was not red at the time i saw him. he said it is clearly an autonomic nervous system dysfunction, and that he had no idea why i thought he could help me. he completely belittled me, repeadetly asking what i thought i would get out of him. when i tried to share my knowledge of blood vessel damage from prolonged flushing and the benefits of laser in curbing that damage, he told me i sound too educated to think he could do anything for me.

again, this is the top-rated dermatologist in my area.

that is fine if he feels there is nothing that can be done for me. i was not expecting a miracle cure. but to repeatedly ask me why i came to see him, that was crossing the ******* line. i tried to explain how much i have lost in my life due to this flushing and he kept telling me that my other issues (heart problems, etc) are the ones i should be concerned about. yes, i agree, and i do worry about those too, but the psychological impact that the flushing has had on my life is far greater than the other issues. what killed me the most was when my doctor said he would never want rosacea so i should be glad i don't have it. whatever the name of what i have is, flushing is flushing!! plus, if he would never want rosacea, then how dare he question me as to why i am visiting him for assistance. obviously the flushing is pretty darn damaging to me too. i don't know how much longer i can go on with this flushing with no treatment at all. the propanolol helps a little, but not much. i can't even blow dry my hair and straighten it anymore. i look like a crazed mountain woman. haha, not really, but i would love to be able to straighten my hair once in a while without knowing that i will be red and burning for ten hours.

his "treatment" - move to hawaii, southern california or florida. great, huh? oh sure, let me just pack up my bags now!!! doctor's orders!!!

he was the biggest ******* doctor yet. and i didn't think it could get much worse than the endo. he kept saying, "i don't mean to be mean, but i just don't know why you would think that a local dermatologist could help you with your autonomic problems. don't you understand that dermatolgists treat skin conditions??"

how demeaning is that??? as far as i'm concerned, a bright red freaking face that is taken seriously by every other doctor i see, but who don't have the means to treat it because they don't have LASERS, is a dermatologist's concern!!!!

what do i do?? see another? or accept that i am going to be a disgusting red monster forever? for anyone with facial flushing as a result of their dysautonomia, do you treat it? have you had laser? were you diagnosed with rosacea?

thanks for listening.

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My allergist was even more concerned about the flushing. It could be several things from mast cell activation to too many red blood cells. Have you ever had a RBC done (Red blood cell count)? I am a big flusher too. I swear that every picture I've had taken without makeup looks like I have just gotten a sunburn! It is embarrassing! Do you have localized facial sweating too?

Jennifer

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Oh sweetie. So sorry the "specialist" was a bust.

I also have facial flushing and often accompanied by bilateral facial pain. Many times I get the intense feelings of a flush with no redness at all. Other times it looks like I have a sunburn on my nose and cheeks. Its been a quagmire.

I was tested for Pheo tumor and carcinoid syndrome but the blood test came back negative. So best I can do is try and avoid the triggers, which is a joke since I have NO IDEA what triggers it.

By the way ... I am in sunny california and it doesn't do SQUAT for the facial flushing.

Firewatcher -- I know what you mean about photos .... good thing I'm a wiz with photoshop! Otherwise everyone would think Mom's a lush!

Hope you find some relief.

~EM

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thanks guys!! i am comforted to know i am not the only one struggling with this odd facial flushing. has anyone been diagnosed with rosacea? or do your docs think it is part of the POTS picture?

i have had pheo and carcinoid ruled out.

my RBC is normal. but i am interested in looking into mast cell problems. perhaps i should see an allergist?

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thanks guys!! i am comforted to know i am not the only one struggling with this odd facial flushing. has anyone been diagnosed with rosacea? or do your docs think it is part of the POTS picture?

i have had pheo and carcinoid ruled out.

my RBC is normal. but i am interested in looking into mast cell problems. perhaps i should see an allergist?

valliali

When I saw the dermatologist to ask about mastocytosis, she completely blew me off and acted like I was a hypochondriac. If you go to an allergist, I would recommend either the oldest you can find (preferably one who is off the mastocytosis doc list http://www.tmsforacure.org/) or one fresh out of med school. Either will be less bias toward a "you're a nut" diagnosis. Definitely get the POTS and MAST cell disorder (http://hyper.ahajournals.org/cgi/content/abstract/45/3/385) printed out and take it with you to leave with the doctor and take in pictures of yourself at your most rosy (I'm sure, like me, you have plenty!)

I had a year long track record with my allergist and was able to ask about things all through the process of my diagnosis for POTS, so as things came up she would test along the way. Keep a flushing log, and if your doc will give you one, a urine specimen jug. If you have a really bad episode, immediately go to the bathroom and flush, then collect the next four hours of urine and get it to your doc to check for methylhistamines (this is what Dr. Biaggioni at Vanderbilt has suggested that I do to confirm MAST cell involvement.) Your treatment may simply be antihistamines to control the flushing (if it is MAST cell flushing) if it doesn't cause you any other problems.

Does your POTS doc know this is a problem for you?

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thanks, firewatcher. great advice.

do you have other symptoms with your flushes? "allergic response" type of symptoms? do you have triggers?

my docs do know this is a problem for me, and all of them find it very interesting. but have no idea why it is happening. i just went and saw a POTS specialist for the first time who was really into the facial flushing, so she has referred me to an endo to get more help for it.

interestingly, the POTS doc does not think that i really have POTS, just some kind of autnomoic dysfunction with a cause. i got sick right after living in africa, so she is also sending me to an ID doc. she thinks that the flushing could be a sign of an active virus or infection. not sure.

i'm also interested in looking into lyme's.

but the mast cell is something i'm very interested in as well. i read that publication awhile ago, it just kind of got put on the shelf in order to address other problems. but the flushing is killllllling me, so i need to make it a priority!

thanks so much for your help.

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do you have other symptoms with your flushes? "allergic response" type of symptoms? do you have triggers?

I feel like there is a "cloud of heat" around my head. If I am sitting in a car and it is cold outside, I will fog up the window near my head. My whole face sometimes sweats, usually it is just my upper lip. If its really bad, I'll get mucusy diarrhea and cramping.

Triggers for me are exercise (really bad,) sex, strong emotion, standing for too long, menstrual issues, and on and on and on....

The only time I am pale is when I have a migraine, after vomiting (unusual for me, I have an incredibly "strong" stomach) or first thing in the morning.

I also have too many red blood cells, so that may contribute to my rosy complexion. B) They haven't figured that one out yet.

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Hey Valliali,

I'm really late to his thread, but I'm DXed with both mast cell disorder and rosacea. Treating the MCAD has definately helped with the rosecea. Antihistamines are often used to treat rosecea alone.

I am supposed to wash with Cetaphil and warm water (never hot or cold.) I also take 50mg of doxycycline and use a special topical gel called Metrogel on the areas of my face that are red- my chin and upper lip typically. I can NOT use anything harsh on those areas of my face, like Retin-A's, etc. I also use a special sunscreen made by Eucerin called "Redness Relief." It is a light mint green color and magically turns my red areas into normal skin color without make-up. Daily sunscreen in really important with rosecea. I've had many broken blood vessels on my face zapped wit a laser by my dermo. It definately helps. You could try many of these remedies w/o your "delightful;" doctor's help. I've heard that there are some vaginal yeast infection treatments that are almost identical to the ingredients in Metrogel. (Research via the internet to check into that.) But Cetaphil and the Eucerin "Redness Relief" are avaiable at a good drug store.

Jennifer/Firewatcher has given you excellent advice re. looking into mast cell activation disorder. In order to be DXed, you must see someone that regularly DXes folks with MCAD. The docs at Vanderbilt are obviously great as well as my doctor, Maria Castells at Brigham and Women's in Boston. The MCAD is almost more difficult to get that the POTS DX as many close-minded allergists do not acknowledge it's existence. Do check into the Mastocytosis Society website for more info: wwwtmsforacure.org

Your symptoms sound alot like rosecea and MCAD. I'd like to hear more of them.

Julie

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I don't know how much this can help, but there is makeup that is designed to conceal severe redness. I have very bad scarring from two surgeries that is on my upper chest. For my sister's wedding, the scars were going to show in the wedding picture with the strapless dress. The more recent scar (keloid), especially, is very bright red which is what makes it so noticeable. We went to the makeup counter at a department store and got a special concealer designed just for scars. This stuff will cover ANYTHING. (The saleswoman said people use it to cover tattoos as well.) It is flesh colored and did completely neutralize the redness from my scars; I was very happy with it. The brand is Dermablend. Perhaps you could mix it with your foundation to help give good coverage of the redness so you wouldn't have to worry about people noticing the flushing? At least until you can find a medical solution.

I hope you find something that helps! Sorry that doc was such a jerk. That's the worst when doctors treat you so poorly!

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thank you all soooo much!!!

i am interested in the mast cell disease. however, i have no other symptoms during a flush. the flushing really only occurs when i am cold and become warm, which, if i had a mast cell problem, i would expect other triggers as well???? also, shouldn't i expect other symptoms? i do feel very very warm when i flush.

i will really have to look into this. i agree that my symptoms sound very much like rosacea.

thanks, heiferfly, for the makeup suggestion! i actually don't wear makeup, but i think that something like what you are describing might really be useful for when i am flushing. when i'm not, skin looks terrific. but during a flush, i won't leave my house or allow anyone to see me. not the best existance.

thanks for all of your support!

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