Severe Flushing?

[cle1106]

Hi,

I've had intensely paniful facial flushing (lasting anywhere from 5 to 20 hrs., almost every day) for the past year with no diagnosis. Despite being referred to multiple doctors and having tests upon tests performed

(for pheochromocytoma, carcinoid, autoimmune diseases, etc.: all negative; the only thing found so far is a deficiency of several B vitamins), no-one really seems to have a clue as to what could be causing this.

I'm also suddenly very intolerant to heat as well, despite being only 19 (so obviously hot flashes because of menopause are out of the quesiton). I've tried beta blockers with little success and am currently on clonodine, which controls the flushing to some extent, but isn't enough to stop it from being very debilitating.

Recently I had a doctor bring up the possibility of dysautonomia after my heart rate went from 53 to 125bmp upon standing (I haven't had a tilt table test yet). I noticed that flushing was listed as one of the symptoms, but wondered whether or not anyone's flushing with POTS is this severe/recurrent.

I'd really appreciate anyone's thoughts/experiences --

Thanks, Courtney

[Dizzy Dame]

I have flushing episodes, although mine are more short lived. We're currently testing for methylhistamines. You might want to do a search within this site using the keywords "Mast Cell Activation". This is a condition that causes flushing and dysautonomic type symptoms.

Have you had a Tilt Table Test? That's one of the ways doctors test for POTS/NCS. There are several other ways to test the function of the autonomic system, but from my knowledge, they're only performed by specialty clinics such as Mayo, Vanderbilt or Dr. Grubb. I may be wrong on that though.

Good luck finding answers,

Lauren

[JaneEyre9]

Welcome Courtney,

I don't have any advice on the painful facial flushing, but your heart rate fluctuation does seem to indicate POTS. If it increases by 30bpm or more upon upright posture, then that is likely a POTS symptom. The gold standard for diagnosis is a tilt table test.

I do have facial flushing sometimes with POTS, but it's not especially painful, just warm and annoying. Could you have a dermatological condition in addition to an underlying systemic issue? Rosacea can cause serious flushing. Lauren also raised a good idea with the "Mast Cell Activation."

keep us updated!

PS- a quick google search on "facial flushing" pulled up lyme disease too. have you been tested by a lyme specialist?

[Ernie]

Hi,

I have flushing but it's right before I faint and it does not last so many hours. Maybe you have another underlying condition.

[cmtaylor5]

Hi,

Since you mention that you have deficiencies in some B vitamins, do you take any Niacin (B3) vitamin supplements? Niacin causes painful, burning flushing in many people.

You heart rate increase upon standing does sound like POTS.

Good Luck,

Carolyn

[calypso]

I also have episodes of flushing; they are rare and only last for about 10-30 minutes. But they are INTENSE. I also feel like I am choking, and my heart rate tends to go up significantly when this happens. At first one of my doctors thought these were panic attacks, but the flushing/choking seems more like a histamine thing. I went on Effexor about a year ago an the episodes stopped completely. I am going off of it now and hope they don't come back!

Hope you get the correct diagnosis. In the meantime, welcome.

Amy

[cle1106]

Thanks so much to everyone for the welcome and comments!

DizzyDame: No, I haven't had a tilt table test yet -- my internist has me doing CT scans first to rule out adrenal tumors and the like. I had been wondering about mast cell activation disorders -- do you know if they're pretty much the same as mastocytosis? I believe I've already been tested for the the latter (blood tryptase levels?). The methylhistamine test seems ike something to look into.

JaneEyre9: I've seen about five dermatologists (including specialists at the University of Michigan), all of whom are pretty much stumped. The only answer I keep getting is that this is something systemic, not dermatological. However, in the meantime, I was put on standard rosacea treatments to see if they could provide any relief until I got a diagnosis, but the antibiotics prescribed seem to make everything go

haywire and I had similarly bad reactions to every topical. Some of the dermatologists recommended I go on to Mayo, so it looks like I'll have to end up going that route.

I haven't had Lyme brought up as a possibility yet, though I've read a bit on it myself... From what I remember, it seems like most affected have an accompanying rash (bullseye pattern?), though I could be completely wrong about that.

Carolyn: Unfortunately, this began months before I started taking a vitamin. I was worried about the niacin exacerbating the flushing, but was reassured by my internist that the amount of niacin in a multivitamin is too small of an amount to do anything.

calypso: That's really interesting that the Effexor worked for you. I was prescribed it as a last-ditch effort after other medications (atenolol, neurontin, etc.) weren't touching the problem. I didn't see much of a change, but maybe I didn't stay on it long enough for any real effect -- I wasn't too happy with the side effects and quit it after a few weeks. Did you see an improvement fairly quickly? I got several conflicting answers from doctors about the length it takes to notice any real difference (initially I was told that since it helps the flushing and hot flashes of menopausal women quickly, I supposedly should have seen an improvement in a week; a second doctor told me it'd take at least a month).

Thanks again, I really appreciate all of the help. Getting responses instead of just reading a list of symptoms has helped quite a bit already

[Lily Pearl]

The flushing may be partly due to Florinef if you are taking it. I experienced flushing before I started taking it but even more so afterward. If you take Florinef it tends to flush the potassium out of your body and so it helps to take potassium supplements - eating bananas or oranges won't adequately meet your need. When I began to take potassium I found that the flushing diminished substantially though I still experience the heat and sweating from time to time and for no reason that I can figure - but there has been a great improvement. The doctor has also told me that it is important to take additional vitamin D when on this medication.

Lily

[Dizzy Dame]

Cle,

Mastocytosis and Mast Cell Activation are two separate things. One is a type of leukemia, while the other is a "benign" release of histamines into the blood stream. I say benign because Mast Cell Activation (from my understanding) is mostly non-lethal, except in extreme cases where the paitent has other factors that would cause a sudden spike in blood pressure to be dangerous.

Mast Cell Activation is tested through the urine after a flushing episode. You might want to talk to an allergist, that's the person who's most likely to know how to perform the test.

Good Luck,

Lauren