My First Post-Help!

March 19, 2002

I have had a flushing disorder for about 10 years now. My face gets very red

and hot and sometimes my ears and chest also turn red. At times it is so red

it is almost purple. My face can swell some in the malar area with these

flushing spells. There is also internal heat. This comes and goes, and is

ideopathic-no known causes.

Mastocytosis and Carcinoid Syndrome and Pheochromocytoma were all ruled out.

At one time I was diagnosed with " Hypothalamic Thermoregulatory Dysfunction "

but when I did not respond to their experimental treatment, they kicked me

out of their study so I wouldn't skew the results, and said I didn't have HTD

after all. I do have systemic Sjogren's Syndrome and it has affected my

Central Nervous System. Some of my doctors believe that my flushing episodes

are related to the SjS messing up the CNS, which in turn messes up the

autonomic system of the hypothalamus-in other words-my " thermostat " is messed

up. I also have high blood pressure, but the flushing doesn't just happen

when my BP is elevated.

Then I started working for a dermatologist. I showed him my flushed face. He

said I had rosacea. He prescribed antibiotics. I saw him again this week and

he said he thought I was getting better except for the flushed coloration. I

never really did have acne, so I am not sure what he thinks is getting

better. He told me that it is possible that my flushing is not related to my

rosacea. He said I could just have a ruddy color-which isn't the case because

this comes and goes. Then he said it could be due to me being raised in an

area that had cold weather, which dilated the blood vessels of my face. But

the onset of this was at age 28, and I have lived in Texas for the last 7

years. He said what I have is telangectasias. I know this can be associated

with rosacea, but it can also be associated with other things, even with

connective tissue diseases like SjS.

I guess I'm just curious if my story sounds familiar to any of you and what

treatment you are on. I don't see why I should even call this rosacea if the

redness is not helped by treatment, and I didn't really have much acne to

begin with (just some cyclical acne). I don't want to be on longterm

antibiotics if I don't have rosacea. But maybe I'm just in denial and I do

have rosacea.

He also said one other curious statement. He said that Metrogel very possibly

could be a placebo type drug because rosacea comes and goes anyway and maybe

the gel isn't really helping patients. But then he turned around and told me

once we get things under control, that he might switch me from oral

antibiotics to something like Metrogel. Does this make sense?

And lastly, he has me " grounded " from foundation and powder and skin care

products. I'm just to use soap and water (I use a non-soap facial cleanser

and an oil-free moisturizer). He said it was very important to avoid oil

based products and also alcohol based products. What else is left?

Thanks in advance for all your help. Feel free to email me as well. My doctor

said I should be grateful that this is not a life or death problem compared

to some of my other health issues, but the flushing spells are very

overwhelming.

Kathy W.

March 21, 2002

Kathy,

I believe I have the same problem with my cns/hypothalamous/thermostat out

of whack. For me the cause is hormonal--I took a hormone pill that caused

hot flushes--but I am beginning to realize there can be many causes for

this. Flushing can be your body releasing heat and if your body temp is

off for any reason, that will happen. I feel lucky because I know my

problem is hormonal and that this will eventually go away--it has

before--but I know for many people it is really frustrating to try and

stop it. In your case it seems you know the cause, but not the cure.

I am surprised your derm said the flushing may not be related to rosacea,

since flushing is what leads to the redness/swelling of rosacea.. at least

in my case it did.

--- WillisWay@... wrote:

> I have had a flushing disorder for about 10 years now. My face gets very

> red

> and hot and sometimes my ears and chest also turn red. At times it is so

> red

> it is almost purple. My face can swell some in the malar area with these

>

> flushing spells. There is also internal heat. This comes and goes, and

> is

> ideopathic-no known causes.

>

> Mastocytosis and Carcinoid Syndrome and Pheochromocytoma were all ruled

> out.

> At one time I was diagnosed with " Hypothalamic Thermoregulatory

> Dysfunction "

> but when I did not respond to their experimental treatment, they kicked

> me

> out of their study so I wouldn't skew the results, and said I didn't

> have HTD

> after all. I do have systemic Sjogren's Syndrome and it has affected my

> Central Nervous System. Some of my doctors believe that my flushing

> episodes

> are related to the SjS messing up the CNS, which in turn messes up the

> autonomic system of the hypothalamus-in other words-my " thermostat " is

> messed

> up. I also have high blood pressure, but the flushing doesn't just

> happen

> when my BP is elevated.

>

> Then I started working for a dermatologist. I showed him my flushed

> face. He

> said I had rosacea. He prescribed antibiotics. I saw him again this week

> and

> he said he thought I was getting better except for the flushed

> coloration. I

> never really did have acne, so I am not sure what he thinks is getting

> better. He told me that it is possible that my flushing is not related

> to my

> rosacea. He said I could just have a ruddy color-which isn't the case

> because

> this comes and goes. Then he said it could be due to me being raised in

> an

> area that had cold weather, which dilated the blood vessels of my face.

> But

> the onset of this was at age 28, and I have lived in Texas for the last

> 7

> years. He said what I have is telangectasias. I know this can be

> associated

> with rosacea, but it can also be associated with other things, even with

>

> connective tissue diseases like SjS.

>

> I guess I'm just curious if my story sounds familiar to any of you and

> what

> treatment you are on. I don't see why I should even call this rosacea if

> the

> redness is not helped by treatment, and I didn't really have much acne

> to

> begin with (just some cyclical acne). I don't want to be on longterm

> antibiotics if I don't have rosacea. But maybe I'm just in denial and I

> do

> have rosacea.

>

> He also said one other curious statement. He said that Metrogel very

> possibly

> could be a placebo type drug because rosacea comes and goes anyway and

> maybe

> the gel isn't really helping patients. But then he turned around and

> told me

> once we get things under control, that he might switch me from oral

> antibiotics to something like Metrogel. Does this make sense?

>

> And lastly, he has me " grounded " from foundation and powder and skin

> care

> products. I'm just to use soap and water (I use a non-soap facial

> cleanser

> and an oil-free moisturizer). He said it was very important to avoid oil

>

> based products and also alcohol based products. What else is left?

>

> Thanks in advance for all your help. Feel free to email me as well. My

> doctor

> said I should be grateful that this is not a life or death problem

> compared

> to some of my other health issues, but the flushing spells are very

> overwhelming.

>

> Kathy W.

>

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March 21, 2002