Anyone Have Facial Flushing/ Burning?

[ann35016]

Hi Everyone,

I just recently was dx with Pots. This was mainly because of the ttt. I also have a sis with pots. I am still not 100% positive that this is what I have. Unlike my sister,I never have a rapid heartbeat, only skipped beats, or pvcs. I went to the dr when I started having near fainting / dizziness. My blood pressure has always measured normal and my heart rate is normal(never too high or low/ only palpitations.) I also had sob . Usually, when the palps were at their worst, I would get a really , really hot face. It feels like a blistering sunburn. It is not a rash. Now I get a flushed face even when I am not having palps.(I dont get a sweaty flush, i get a dry flush)

I am on beta blockers and they really help the pvcs. The palpitaitons are better, but I still get really horrible facial flushing most days. (especially at night) I have been given 24 hr urine tests that ruled out catecholamines or metas as well as the 5Hiaa test for carcinoid syndrome . All negative.

In additon, by dr gave me an ANA tests. The first test was a low pos. They did much more extensive bloodwork which was sent to mayo and it all came back negative. I have been checked for female hormones and have had 3 different types of thyroid tests- everything has come back normal. My cbc was normal and the cardiologist( I was admitted to the hospital when the palps started) did and echo , stress tests(nuclear) and basic metabolic panel. All also normal. He dx me with benign pvcs. Another dr at the mvp/ autonomic disorders center later dx me with pots.

It has gone from slightly annoying to something that keeps me up at night and makes me very uncomfortable. It doesnt feel like I am hot . It feels like my face has been chemically burned. As a matter of fact, i had a tca facial peel(medium peel) several years ago. It feels a lot like that, except no stinging, more burning. I usually put a wet cold washcloth on my face. It can last anywhere form an hour to most of the night. It also affects me in the daytime.

I am also having some visual disturbances (strange sensations,but good focus) ,stabbing pain on my head and a strange sleep problem . I just am curious to see if anyone here is having burning /flushing of the face. I feel like I either have something other than pots, or something in addition to it. I know there is a whole range of different symptoms for different people, but even the doc said that I might need to see a neuro over the other problems.

any input is appreciated.

Thanks

[MomtoGiuliana]

Mast cell activation disorder can cause facial flushing. Here's a discussion:

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=4669

[mkoven]

Not sure this is the same thing, but I have rosacea. the vessels in my face dilate too easily and I turn flushed. And I stay pink with some broken blood vessels on my face. Perhaps related to pots, but rosacea is much more common.

[ann35016]

I never had it happen at all until a few weeks ago when all my symptoms started .Its really bad when I am having palpitations. Does your face actually burn? Mine is so bad I have to put a wet, cold cloth on it. It also seems worse at night. I dont stay pink. It seems to turn back to normal later. Even when I am not having palpitations it happens . It lasts anywhere from a short time, to several hours. Does this sound like Rosacea maybe?

[MomtoGiuliana]

I have rosacea too. What you are describing does not sound like rosacea b/c it does not come on or resolve suddenly and does not burn. Flushing is a symptom of POTS, but can be something else too--such as mast cell activation disorder. Some people on this forum have this and it requires a particular treatment. You would need to be diagnosed by a specialist.

Katherine

[Miriam Poorman-Knox]

This sounds like mastocytosis. I have it. Folks would assume I was angry at them because my face was red. I wasn't aware. Good Luck Miriam

[ann35016]

Miriam,

What were your other symptoms? I dont have a racing heart rate or any kind of diarrhea. I also dont itch. Things like this are hard to dx. How did you manage to finally find out what is wrong with you. I just dont have any luck with dr,s.

ann

[hfollett]

I have Mast Cell Activation Disorder (MCAD). Even though my trypase levels came back OK (which is one way to diagnose), my doctor agreed to treat me empirically to see if my symptom went away. And thank goodness - they did.

MCAD is basically that your mast cell release or degranulation is easily triggered. In my case, I was able to begin linking some of the triggers to the symptoms of facial flushing, burning, and basically my whole body "tanking".

Here is a link to a good page that describes mastocytosis, MCAD, and some of the triggers. http://tmsforacure.org/patientinfo.shtml

If you have an episode of facial flushing, try to figure out what has happened prior. For me, triggers are heat, certain foods, stress, and over exercising.

The treatments are really, really benign, which is why my doc agreed to try to treat it empirically. They usually prescribe an antihistamine (Zyrtec), a H2 blocker (Zantac), and some type of mast cell stabilizer (Gastrocrom). Zantac is available OTC ... you could try an OTC antihistamine (Claritin) and see if you begin to get some relief.

Try to log what you've been eating too and see if you can find a pattern between your diet and reactions.

Good luck!