Facial Flushing And Red Botches On Neck/chest

[DoozlyGirl]

Hi everyone,

Haven't posted in a while. Previously, my endo was considering insulinoma, but that was ruled out and abrupt sugar and insulin spikes are now considered to be related to extreme stress response to my significant orthostatic hypotension. During my last appointment with Autonomic Neurologist, he was concerned about my intense facial flushing, red blotches on my neck, and raised red bumps on top of my hands. Sent to dermatology, where they saw the same symptoms come and go over the course of my appointment. My dermatologist ruled out systemic mastocytosis with tryptase of 2.5 (normal to 11) and skin punch biopsy of blotchy skin on upper chest. Could really use some input from you all, especially curious if any of you with orthostatic hypotension +/or autonomic neuropathy have non-itching flushing or blotching?

Dermatologist originally thought blotching was chronic hives and send me home to take 3 zyrtec a day and eliminate red and yellow food dye from meds/diet. I never had a problem with zyrtec before so took 1 (generic, white pill) for 5 days without issue, then added a second pill for 5 days before adding a third pill. The day following the third pill, I started the worst 3 day episode of OH that I have had in 2 years -- BP 110/70 while laying, 166/110 while sitting then 88/66 while standing. At the time, I was taking 75 ug Levoxyl, 20 mg verapamil, 75 mg ranitidine and 5 mg zolpidem. Since I had been titrating the verapamil up from 10 mg/day over the previous three weeks, I kept at the 20 mg while adding zyrtec. After the 3 day OH episode, I awoke the next day with more energy and clarity than I have felt in 5 years. I kept busy and enjoyed this reprieve until it lasted all night. Even with several attempts to sleep, I was awake for 40 hours before finally sleeping but towards the end my family said I was wired - talking really fast, bouncing off the walls. This is how I recall feeling prior to my world changing due to AN. After I finally slept, I awoke the next morning with a 14 hour migraine. Day 3, stopped both the verapamil and zyrtec until I figure out if I should restart, but now wonder if that triggered migraine. Consulted both physicians, who are at a loss and trying to figure out what to do next. Wonder if the combination an addition to zyrtec dose is involved with this reaction?

Funny thing is, I often get GI symptoms with this flushing, so now I am looking at some mast cell connection, as others have suggested from my medical history. Also have dermatographism and extreme sensitivity to fragrance and history of anaphylaxis/anaphylactiod reactions treated with epi, as well as other numerous significant reactions/episodes (some triggered by meds, some by foods?).

Learned skin biopsy didn't support hives, but did show dilated blood vessels. Since my blotching does not itch, is not raised and only gets hot, = not a typical histamine reaction. Dermatology wonders if flushing/blotching may be related to some type of vascular leaking due to autonomic neuropathy/orthostatic hypotension. If it's not histamine, could this leaking be caused by a different mast cell mediatior?

Neither neurologist nor dermatologist are familiar with MCAD, but both are looking into it. Dermatologist felt that the concept of MCAD is plausable to describe my odd presentation, and encouraged me to continue down that path, especially after I shared a synopsis of what I learned in my research, and connection to autonomic dysfunction.

Would love to hear any personal responses with flushing and blotching and reactions to high dose antihistamines/zyrtec. Been on the Mastocytosis Society website, DINET archives, and pubmed, now looking for personal experiences.

Thank you for your input and thoughts on my current episodes.

Lyn

[Katybug]

Hi Lyn,

I had a lot of similar things to you going on and suspected mast cell issues. After talking to my PCP, we agreed I needed to see an immunologist. I have had great success with the immunologist and he has found more answers for me in a month than all the other docs in 4 yrs. He did allergy testing as well as extensive testing of my immune system and we found a few things. We are supposed to talk treatment plan this coming Tuesday. I wish I had seen him sooner. If you think it is a mast cell issue, an immunologist may be a grat help.

I wish yo uthe best.

Katie

[anaphylaxing]

I have MCAS and POTS and have a lot of the same issues as you. I flush with almost everything I eat and when I'm having a reaction to a scent or other trigger. A normal tryptase does not exclude MCAS. You should see a doctor familiar with mast cell disease.

Have they ruled out carcinoid and pheo as a cause of flushing? If not, they should as allergists will want this excluded before proceeding.

For now try to see if you can identify triggers and AVOID them

there is a mast cell disorder forum if you google it.

Most treat with H1 and H2 blockers and mast cell stabilizers. I'm also on steroids and trying to taper off. I've been having symptoms for 8 months and still haven't been able to get total control of my symptoms.

Good luck and keep us posted

[anaphylaxing]

ooops MCAS is a debated entity but there are other tests for it like urine N-methylhistamine and prostaglanding D2

[Maiysa]

HI Doozlygirl,

Your episode sound a little bit familiar. I also have autonomic neuropathy and am having similar symptoms like yours. My skin gets blotchy and I get so flushed, but my pupils dilate. Not sure if you have that. But the whole thing is very scary. My blood pressure goes up and down. The girls on this site brought it to my attention about MCAD, so had my tryptase test done and it was 11, with my normal from 1-10, and I was feeling completely fine during the test, so I want to try to take one when I'm having an episode. I contacted the Mast Cell blog and they sent me quite a bit of information, they were also very helpful. But the information was overwhelming and above my head, so, I will just have to try to find a doc to rule Mast Cell out. I was told that my mast cells could be granulating, not sure what it means, but I guess I need to look into it and I hope that's not true. YIkes. But I'm very curious about your doctors theory about dilated blood vessels. I feel that is what is happening to me also. Occasionally my skin itches but I don't get the hives. I did a time ago, but it was during a terrible lung infection. Also, I was able to take a walk today, first time in almost two weeks, but had to stop due to something that my husband and I have come to call "prickly heat", don't know how else to describe it. But from my mid tummy down to my knees I was on fire and started itching. This only happens if I walk too fast. Don't know what it is? When this happens we have to pour cold water on that area to make it stop. It is uncomfortable and sometimes will go into welts. But I don't think it's allergy, I think it is my circulation or something. Okay, hope you get some answers soon and if I do, I will compare notes with you. Good luck and health to you!!

[anaphylaxing]

Maiysa just to pop in the mast cell "degranulation" just means that instead of being all relaxed the mast cells have been "activated" or turned on. When they activate they kinda explode and release their contents aka granules a process referred to as degranulation.

ALL it means is that the mast cells are turned on and releasing chemicals/mediators that cause the allergy like symptoms that we experience.

Mast cell stabilizers are supposed to help stop the mast cells from activating and releasing their mediatiors. Our goal is to stop mast cell activation or mast cell degranulation

I'm probably still not making any sense?

[Maiysa]

Ana, you are making perfect sense. Thank you so much for clearing that up for me. I was sent several detailed articles on Mast Cell but was so overwhelmed with all the information. But it was very very informative from what I could absorb. So thank you for putting it in laymen's term for me.

[chipper]

Yes! Yes! Before I got better.

[DoozlyGirl]

Thanks for the responses. Sorry you are all going through this. Have gone through something similar in the mid 2000's, and after some hard work did get my immune system to tame down, but something has it torqued up again.

Katie - Will see if I can find a immunologist in my state that may be able to help me. Would love to hear more about your plan that your doc comes up with and hear about the testing he did on you and what you have learned from his approach.

Ana - Thanks for the tip on N-Methylhistamine and prostaglandin D2. Yes, pheo has been ruled out four times, but it has been 6 years since my last urine test to rule out carcinoid. Long before autonomic dysfunction was diagnosied, I had gone through extensive allergy testing and taken sublingual drops, H1 and H2 and even gastrochrom for years. My allergist told me my mast cells were an issue but this was 8 years ago, before MCAD had gained support. A complete change in my diet and elimination of frangrence in all my personal and home products, as well as treatment of chronic candidiasis really improved my reactions, to the point i could manage any symptoms. Intersting how the flushing re-emerged recently which coincides with skin candidiasis returning, and now I am back to being supersenstive again. Am now wondering if the recomended approach to stabilizing my blood sugars set me back down this path (increasing carbs/wheat and short term glucose tabs for plummeting sugars). Already working on the candidiasis and elimination of triggers, which is easier this time around since I have an idea of where to start. Learning so much from the mast cell forum and this one to help fill in the blanks. There is so much more information out there on mast cell disorders than when I dealt with this in the mid 2000's.

Maiysa, my pupils are mostly really small, almost pinpoint. Will post on the diated blood vessels theory when I learn more.

Thanks again, Lyn

[anaphylaxing]

Fascinating Lyn that you gained control in the past but SO sorry that you're back here...

What did you end up eliminating? I am now reacting to all scents so am interested to learn more about your food/lifestyle overhaul if you care to share

[DoozlyGirl]

Thanks Ana,

Here's hoping that maybe some of my experience can hlep you.

Allergy testing showed I reacted to 25+ allergens, the majority being foods, with the rest falling into the environmental category. Once I learned this, I could stay away from those allergens. Testing pointed to dairy, wheat (not gluten), corn, eggs, tomatoes, potatoes, rice, oats, MSG, sulfates/sulfites, nitrates/nitrites, with dairy as the most significant food trigger. Perfume, church inscense and allergen testing for cat has sent me into anaphylaxis/oid reaction requiring epi. Eliminating what I could did slowly lower my allergen threshold. Allergist told me white flour doesn't have enough wheat to be a factor, so I eliminated whole wheat, went back to minimal white flour. Allergen drops did help to significantly drop my blood levels for all still react to but dairy, but don't mind since I found almond milk. Did elimination diet for months, by adding foods I rarely ate previously. Added sweet potatoes, lots of veggies, organic chicken, and eliminated processed foods, converted meds to non-allergen ones. That was when I learned every med I was on at that time had corn, several had lactose and one had gluten, which included wheat.

I had also began reading food labels and medication package inserts for everything I put into my mouth. Once I got the hang of it, I went though my personal care products. I switched my shampoo, conditioner, toothpaste, body lotion, and body wash to fragrence-free natural products. Good thing I studied chemistry in college, because that was pretty tough to understand those ingredients. I got rid of room fresheners, candles with smells, furniture polish, conventional cleaning products/detergents and began to convert to natural or at least fragrence-free products. I began using essential oils, such as eucalyptus and tea tree oil, vinegar, baking soda to replace my other products. Family/friends stopped wearing perfume near me.

Treating the candidiaisis was a critical part of my treatment. I had previously been on tons of antibiotics for years and had 7 surgeries in 5 years. I was battling cyclic sinus infections, URI's UTIs and skin infections. Once I got off the antibiotics, eliminated triggers and sugar, took HI, H2 gastochrom, added a prescription strength liquid magnesium and probiotics, my immune system settled down and I became much less reactive.

Not too hard to see how MCAD could explain this, huh? Now gearing up for finding someone to help me with all this.

Best wishes and let me know if you have any questions. BTW, do you react in detergent aisle at grocery store?

Lyn

[janiedelite]

Doozlygirl, I'm assuming that the urine test for carcinoid was the 5HIAA. This only tests for the serotonin that is produced by midgut carcinoids, and only the serotonin that is produced during a flare during that 24 hr urine period. There are foregut carcinoids in the lung and stomach that primarily produce histamine. The best test for carcinoid in the foregut, midgut or hindgut (colon) is CgA (Chromogranin A). This blood test is for CgA which is released by all types of carcinoids and is 95% accurate in detecting carcinoids. Also, it will detect elevated tumor activity that has occurred within 7 days prior to the blood draw.

Other tests include neurokininA, pancreastatin, gastrin, etc.

I have symptoms like yours. My mom has carcinoid syndrome.

[DoozlyGirl]

Thankful,

Thank you so much for your post. My only 5HIAA was done about 6 years ago, and was not done during a flare, so not surprising it was negative. Will revisit the 5HIAA and ask for a CgA (which I have never had done) and ask about the other tests. My team of physicians are pretty willing to help me, especially since my symptoms are escalating.

Thanks again, Lyn

[TCP]

I have put my flushing and blotchiness down to the blood flushing in the skin, as I have autonomic neuropathy. I see the same marks on people who are stressed so there is a link. My flushing affects my feet, hands, arms, chest and neck. it seems to get worse as the day progresses. I'm not unduly worried about it, as the nerve pain and tachycardia/BP problems are more of a worry.

[DoozlyGirl]

Thanks TCP for your response. Your flushing extends on more of your body, but I do get a flushing after taking a shower, wherever the water hits (hot or cold). As I have been able to untangle my symptoms over the past two years, It is more clear that flushing/blotching immediately precedes pretty immediate GI evacuation (top and/or bottom) and then the cascade goes through dizziness, nausea, tinnitus, brain fog, palpitations, blurry vision, and by the time I figure out what's going on, my OH is in high gear. All these posts are helpful in sorting out the "chicken and the egg" . Best regards, Lyn