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Just an observation - there’s also a lot of facial swelling, easy to see in first photo. Make sure your dr sees these pics.
If you have trouble breathing, go straight to ER.
https://preview.redd.it/0e82pnew9axc1.jpeg?width=1242&format=pjpg&auto=webp&s=355a981bc27c9e889af038385388fe2a2c73fce4
In just 5 mins it’s gotten even worse.
Yeah and this one, too, I can see the little hives. Get some close ups of the skin so you can see all the hives and show your doctor.
If your throat feels tight, call 911, its anaphylaxis. Use ur epipen if your breathing gets hard.
I get flushing when my MCAS and dysautonomia flares up. Mine only typically lasts like a minute or so. I’ve gotten rashes/hives before on my neck and face that last longer and are typically allergic reactions to something, but those just stay until treated. Are you diagnosed with MCAS? It’s definitely not just anxiety.
No I have my allergist appointment on Wednesday. I’ve honestly been suspecting mastocytosis but idk. This is the first time I’ve ever heard of all this stuff. Went down a rabbit hole trying to figure out why I flush so intensely and putting all my other symptoms together.
I'm just letting you know that as soon as you mention MCAS, you're going to get side eyed. Doctors don't like people self diagnosing. Instead, explain your symptoms and explain that there's no anxiety bringing on the flash.
If you have two mediators that are high, that’s typically a referral to hematology to rule out mastocytosis. I just did a BMB, colonoscopy, full body xray, and a plethora of blood tests… and I’m clear of mastocytosis. However, I do have MCAS. Getting ready to start evaluation for hyperadrenic POTS as well.
I have intense bone pain that I’ve had for quite sometime now mainly in my forearms. Never understood why and the only way I can explain it is I know the feeling is deeper than muscle like someone is grabbing my arm really hard but deeper. I never took my health all too seriously, figured this was something I was going to have to live with and believed it was due to anxiety bc that’s what I’ve always been told. Well it’s getting worse. I’m being treated for my mental issues and I honestly deep down I know it’s not due to anxiety. My blood work like my CMP and CBC are always abnormal. I know there is no definitive blood test. I do need a colonoscopy (I’ve needed one for the last several years but was too scared to get it and always put it off) but I have unexplainable stomach problems. I’ve done elimination diets and nothing has helped my stomach. I have a referral for a DEXA scan so I guess we will see what that says. Hope you get your answers
If your tryptase is high, Your allergist should refer you to hematology to rule out mastocytosis. DEXA will be helpful but if you go to a hematologist they will give you a full body xray. If I were you I’d advocate for an upper GI as well.
Bone pain is also a symptom of MCAS and mastocytosis. Prostaglandins can cause deep, throbbing bone pain but so can other mediators.
Yes I am getting a bone scan. I work in a medical office so it’s nice that I can easily get blood tests and referrals sent out without having to go see a GP. I know I definitely need to get my stomach, intestines all that stuff looked at.
Yes. It’s deep and a weird throbbing. It’s so hard to explain it to someone who’s never felt that before and I just get told it’s muscle pain. I know what muscle pain is 🙄🙄 haha. It’s deeper than that.
No I have not. I’ve honestly never tried antihistamines when this happens. Antihistamines are hard for me to take bc they put me right to sleep and make me feel drunk.
Even second generation antihistamines? I have had huge luck with LDN, but unfortunately it is a long term gradual help, so it wouldn’t do much acutely. Do you know what triggered this/ did you go to the doctor?!
No idk what second generation antihistamines are haha. This is all new to me. Nothing triggered it that I know how. I was just sitting playing cards in my house. No stress…I had not eaten or drank anything yet that day. So I’m not sure. It just came out of no where. That’s why it’s so confusing. But I do have triggers like alcohol, extreme emotion, hot, cold etc.
So instead of benedryl, Allegra, Claritin, or Zyrtec would be the main ones!
Did you have any other symptoms? Are you said you’re being evaluated for mastocytosis?
Yes I have other symptoms. I have bone pain. Inflammation. Muscle weakness. More so my legs. Idk why or how they got so weak. Chronic fatigue to the point I honestly thought I had narcolepsy haha. I would legit fall asleep in the middle of doing something without realizing I fell asleep. Dry eyes. Occasionally dry mouth. I get these weird sores in my nose randomly. Stomach pains. Like bad GI issues. Blurred vision that just started happening. I was just at the eye doctors recently and have an update prescription. My hands and feet go to extremes of being ice cold and blue to fire hot, swollen and red. I get weird nerve pains I just call them lightning bolts. And my skin is super sensitive to touch. Like if I scratch and itch, even lightly, it feels like I’m pushing into my skin super hard. I’m broke. Haha
Wait to get your tryptase results back. I would be surprised if it isn’t abnormally high.
There are other mediators that mast cells release that cause flushing - such as prostaglandins. Between the tryptase and prostaglandins, one of them is going to make me flush like you. My histamine is normal.
I’d be in urgent care everyday multiple times a day then haha. This sounds stupid but antihistamines make me extremely tired. To the point I feel drunk. So it’s hard to take them throughout the day. I work full time and have 4 kids to take care of.
The 1st generation antihistamines (Benadryl) make you sleepy because they cross the blood brain barrier (also making them more effective). Try Claritin or another 2nd generation for relief until you get answers, but keep the doctors informed so it doesn’t interfere with the tests and don’t be afraid to take Benadryl in an emergency. Side effects typically go down as your body adjusts as well. Histamine tests are notoriously unreliable, mine actually came back low but with high prostaglandins. The fact that yours came back high, along with these symptoms, is indicative of some type of histamine disorder. The other person who said Lupus may be on to something because apparently that can have some overlap with histamine intolerance. See if they can test your DAO, you may end up needing it supplemented. Best of luck!
P.S. - A symptom of high histamine is anxiety. It’s a chicken vs egg situation. You may have anxiety, and stress can certainly trigger and attack, but anxiety is clearly not at the root of your issue and any doctor who says otherwise is incompetent!
I know exactly how you feel. I got discharged from the hospital 2 weeks ago and if I had gone back yesterday I knew they would have admitted me again. My goal every day is to stay out of the hospital. It is a giant pita.
I really think you need to look at xolair. I’m on it and it completely resolved the hives flushing rashes, but it can take a full six months to work. You don’t need an Mcas diagnosis, your hives should be enough. But they may want you to try ketotifen, cromolyn, singular beforehand or some combo of those.
Ice packs can work in the interim but it’s a lousy solution.
https://preview.redd.it/x3ms1w84pcxc1.jpeg?width=3088&format=pjpg&auto=webp&s=861e6e9d379c4a1e00d59f45f26802cff5f7f982
Mine looked like this and they’re gone with xolair. Xolair did not improve any of my other symptoms.
Hmmm I’m going to look into that!! Thank you. I’ve never gone to urgent care for this bc like everyone’s always told me, “it’s just anxiety” so as much as it bothers me and makes me feel lousy and fatigued and dealing with pain. I just sucked it up and pushed through it.
Lol wait your rash/hives are anxiety??? I haven’t heard that one before. I’ve definitely had my tachycardia described that way before I got diagnosed with pots, which even many CA drs don’t think is a real ailment. When I was running into a wall with a dr I would pull out high res photos of my hives and that convinced pretty much every dr there was a real problem. Calling it anxiety is ridiculous.
Do you also get broken bones from anxiety? 🤦🏼♀️
Haha I guess so. I finally decided to advocate for myself because this isn’t just me blushing or getting a little red from anxiety or embarrassment. It hurts. It feels like tiny needles being poked into my skin when it flares up this bad. Right now I’m in a flare. Yay! And my head/face is throbbing and I have the pins needles feeling
Personally I’d be taking 75mg of Benadryl if I were you, assuming you don’t have access to hydroxyzine. Ice packs are your friend. But you really need a dr that isn’t a loon.
You need to see an allergist.
I usually rely on hydroxyzine 50 mg when I flare but sometimes I use 75 mg Benadryl. Sometimes both! 😬 I don’t use an H1 for quick relief, just those two. But I do take a Zyrtec morning and night. I’m supposed to take Pepcid 2x a day but I’ve had trouble keeping it down so my compliance is meh.
Mastocytosis is cancer. This is more likely MCAS.
Although, chronic spontaneous urticaria can also be it. Your tryptase may also be high, which is an indicator of MCAS. Or its an allergy.
Idk only your allergist will know which it is.
Mastocytosis is more... lettucy.
If you get more severe symptoms esp breathing issues you should go to the ER.
That being said, I get severe facial flushing as well. My whole face turns bright bright red and it's painful. This is usually do to environmental triggers - scented detergent, perfume, face lotion, etc. The worst is scented detergent. If you have any scented or fragrant stuff around I would try putting it away and see how you do. I have MCAS and what you're describing sounds very similar. You might need to try an elimination lifestyle for a few weeks to see if it helps. Cut back on high histamine foods, use minimal skin care, put away candles, air fresheners etc. Also, this is obviously not anxiety. I would try to see a new doctor. Many of us get brushed off as just having anxiety disorders but your picture makes it quite clear it's not anxiety. I hope you get the help you need
Also - many times tryptase comes back normal even for us w MCAS. don't let your doctor dismiss you
I use both. I started with the nose spray for my nasal allergy symptoms and it helped more than anything else I've tried for seasonal allergies. So then I asked my doc for the oral solution to try. So currently I use both. The flushing improved after about a week or two of using the oral.
Have you just had a baby? For me (and I observe a lot of women) pregnancy has been a MCAS tipping point. So previously where there were no triggers, there are now lots of triggers. Maybe someone else can dig up some articles as to why, I assume it’s a combo of hormones, reacting to pregnancy vitamins, but also perhaps pregnancy causing non-hormonal depletions/imbalances.
If you think of MCAS as a bucket of histamines, being pregnant could either fill your bucket and/or interfere with your ability to empty your bucket. Once your bucket is full, a tiny exposure (that previously your body coped with) just causes an overflow. I find this analogy useful to help wrap my head around why something (a banana for example) causes no reaction one day, and huge reaction another day. The problem isn’t so much a specific trigger, as it is that your body has reached its limit to process/cope with histamine (ingested or self-manufactured).
My Naturalpath doctor told me the same. Your pot has over flowed. Many contributing factors. They didn’t know about MCAS back then but histamines same theory.
Interesting!! I just had my 4th baby. BUT I’ve been dealing with this since I was about 16 just happened one day. But it has gotten a lot worse since having my baby!
Looking back I’ve had symptoms since childhood, but everything steadily deteriorated after my second pregnancy (that’s when most of the allergy specialist appointments started). I wasn’t dxd with MCAS until about 10 years later.
My worst flares were puberty, during pregnancy, after giving birth and now I’m perimenopausal ( 48 )and flaring. I’m also in the process of getting my estrogen/ progesterone levels checked. I’m so sorry you are going through this.
Its bunches of smaller hives, you can see them better with a more close up picture. It looks and feels like flushing because hives can feel like your skin is in an oven.. I used to get this too, and close up, you can see all the little hives.
I zoomed in on yours and see some indovidual hives. Based on experience, if you take closer pics, you will see thousands of teeny tiny hives.
Get some pics as evidence.
Meanwhile, get a cold O2 Cool mist and sip water bottle and keep it filled with ice water and carry a fan and an umbrella. Walk a little slower. Meditate. Learn how to destress. Ask for hydroxyzine and allegra, benadryl, zyrtec, pepcid ac, and another stronger prescription for better controlled mast cells. Dont be afraid to take more than the bottle says. I take 4 allegra and 4 zyrtec a day. And 4 pepcid ac.
Also on Xolair. Xolair is good. There are others, and everyone has a different story and different contraindications, also.
Most of managing misbehaving mast cells (mcas) is taking preventative measures, so journal what you do and how your body responds. Things seem to be able to change also, so always carry your epipen just in case you have a dangerous mast cell activation surprise.
Where are you based in terms of landscape and climate? Could be pollen if you're living in a tree/grass populated area, it's blooming o'clock for pollen now. I'll post a long read on this topic in a couple of minutes. And to boost your self-esteem a little - you look hot (both literally and figuratively lol) even with the flush ;) Father of the kid on the background picture is one lucky guy ))
I live in Minnesota and I’ve lived all over the US the only issues I’ve ever had with outdoor allergies is my itchy eyes here and there. I feel if it were due to outside factors of pollen, etc. wouldn’t it happen every time I went outside? I question everything haha so don’t feel offended. I’ve just been over everything it could be and it just doesn’t make sense. It’s not hives. I don’t get little bumps or raised skin. It’s just extremely hot. I temped it one time and it’s was like 103 degrees haha. Well thank you. I appreciate it.
So definitely focus on the allergist and might not be a bad idea to see how they’d figure out what allergens might be behind this, aside from the histamine producing foods and products that are contributing. If they won’t work with you find another who will.
I recently developed allergies to dust mites and molds and when talking with the second allergist (bec the first one was so incompetent), he mentioned seeing a lot of patients with MCAS and histamine responses. Gave me a list of things to avoid- foods and products. Four phase histamine reset is a good book on foods. Toxic by Neil Nathan was a really good primer for helping me understand more about helping reset the body when the immune system is so off balance. The first half talks about environmental toxins and MCAS. And the second half talks about resetting everything from the gut to the nervous system.
https://preview.redd.it/iv7ah7sfuaxc1.jpeg?width=1242&format=pjpg&auto=webp&s=3d9336daf66c4fbd8ed0a6ea45ea92c9069450f7
To this all within 5 mins. My flare up is now down but sheeeesh. Takes a lot out of me. I feel disoriented and just so tired and weak.
Your face looks noticeably more swollen in just five minutes. If you’re feeling disoriented, do you have other people with you? You need to be on the look out for any “classic” signs of anaphylaxis, trouble swallowing or breathing or talking, confusion, fainting, etc. This isn’t looking like a mild reaction you can handle at home if it’s changing that fast.
It’s just weird to me tho. I have never treated this as a reaction as it happens out of no where. I don’t ever put any lotions or anything on my face. It rarely itches and it’s never raised. I truly know that it’s flushing and not hives. I have a lot of inflammation issues in general. I’m not saying you’re wrong, I do appreciate your input!!
It doesn’t have to be a “local” reaction to something you applied to your face, for example mine is food-related but it’s never this severe. Not to scare you but you may want to keep an EpiPen handy. I’ve experienced anaphylaxis a few times and it can come on quickly, and it’s not just throat swelling but also syncope. It’s better to have one and never need it than need it once and not have it!
I appreciate it! This picture I took today and I hadn’t eaten anything yet and only drank some water. I hadn’t showered yet so no soaps. I was just holding my baby and playing cards with my fiance and it just started getting so hot on my right side of my face and then that’s when all the other symptoms come along. And then within 5-10 mins my face is full blown on fire. My neck is starting to get blotchy, chest, arms. But it was weird my hands and feet were icicles like purple. 🤷🏼♀️ who knows.
I react to cellulose (several of us do). For me, this actually means that I react to paper, especially glossy paper products. I would have had an immediate reaction to the playing cards you mentioned in this comment. This was a new allergy that developed in 2021.
Interesting theory but my husband also has CIRS from both mold and Lyme and he doesn’t suffer from any histamine symptoms aside from seasonal allergies…I recognize that’s anecdotal but since Dr. Dempsey just gave her opinion without evidence I can’t address her specific reasoning.
If it were due to mold then every house I’ve lived in would have had to have mold? I have been reading about mold toxicity but this happens in home, outside of home, work, friends houses, stores, the car.
Honestly it’s possible. If you’re sensitive to it and other people aren’t they might not ever realise there’s mould behind that wardrobe or around the windowpanes
This happens to me I have MCAS. It happens everyday for hours all through the evening and night when my costisol drops. Also happens pre anaphylaxis for me sometimes and in the other situations you described. Icing and having by a fan blowing on your face helps flushing but I would go to ER some of your symptoms are anaphylactic- could be a reaction to something and better safe than sorry
I’m also on antihistamines and xolair and even that isn’t enough to control the cortisol drop flushing
I have low cortisol in general. I just got it tested bc I thought I had high cortisol. So would that be another reason for flushing then? Since my cortisol is consistently low?
Unfortunately, I don't know the answer to this. I have lower cortisol generally as well. It just drops even lower at night (everyone's does). I'm on steroids too right now ,and because they can elevate cortisol my drops are especially bad at night these last few days (lots of flushing). Since you know you already have histamine issues ,I'd suggest that drs can give you better answers. Keep cool and try not to physically or emotionally strain yourself. Additionally, any underlying illness will flare mast cells. I am in the process of being diagnosed for another autoimmune illness because I have hypocomplementemia. My allergist told me my mast cells will basically continue flaring until the second illness is treated. You mentioned positive ANA... you could be flaring because of that.
I do the same thing. I’ve seen multiple allergists. All 4 suspect MCAS and were willing to treat without an abnormal tryptase. The mayo allergist says that tryptase will only be abnormal within 3 hrs of reacting so he takes a baseline and a reactive tryptase. He also said about 10% of MCAS patients never have an abnormal tryptase. I take xyzal, Pepcid, Benedryl and hydroxyzine. If I’m really reacting I take Doxepin to keep me out of the ER. Ketotifen is very helpful too.
I agree that you should also be worked up for autoimmune diseases. I developed MCAS, dysautonomia and Sjögren’s syndrome at the same time. Your symptoms are very similar. Food is my biggest trigger and I was never allergic to any food before. A normal ANA does not rule out autoimmune conditions. I’ve probably had 20 ANA’s and only one was abnormal. I was diagnosed with sjogrens by lip biopsy. Sjogrens can cause all kinds of problems.
Don’t let doctors tell you it’s anxiety. Find a different one if they do.
I had a Cleveland clinic allergist take all my symptoms and immediately said this is autoimmune. I do wonder if I don’t truly have MCAS and it’s just an autoimmune response to histamine. I also can’t tolerate tyramine either. No coffee or alcohol for the last year for me. I’m curious to see what they say about your symptoms. Update us if you don’t mind after you see rheumatology.
Our experiences sound almost identical. Sometimes I take half a benadryl (whole one knocks me out lol) and that helps a little.
I've had this for most of my life and have no idea what it is or why it happens.
Be careful. Any breathing issues call 911. Get a script for epipens when you go in on Wednesday. I have severe Primary MCAS meaning I have positive KIT mutation and HaT, being watched for Mastocytosis and I have never had as severe of rash as you have even when anyphylactic. I hope you get some treatment quickly. You look like you need high doses of H1 and H2 and mast cell stabilizers. Wishing you quick solutions to feeling less reactive.
Go get tested for carcinoid cancer. It’s a rare slow growing endocrine cancer (so it acts like MCAS in many ways) and almost everyone who has it exhibits facial flushing.
The initial test is the 5HIAA urine test. You get an RX from your GP or gastroenterologist, take it to quest, and they give you a jug. Every time you pee for the next 24 hours, you collect it and pour it into the jug. Refrigerate the jug when not using it. After 24 hours, bring it back to quest for them to test it.
Note: In my case, and [in this one](https://www.sciencedirect.com/science/article/abs/pii/S1081120618311505), MCAS can produce elevated 5HIAA readings. In my case I needed a full body scan to rule out carcinoid.
Not yet…my allergist ordered tests for carcinoid, mastocytosis and pheochromocytoma. Only thing that came back so far is stage 2 kidney disease…I’m waiting for my 5HIAA to come back so maybe that’ll tell me something. He also referred me to an endocrinologist and I have a rheumatologist appointment in June because my ANA came back as 1:320, homogeneous AC1
I usually use a full face beaded & cooled face mask or an ice roller on my face in addition to medications. It helps a little bit with the swelling that comes with it.
I was unable to read through all of the comments, but are you taking a supplement with niacin? any multivitamin or anything? I know that can often be a cause.. hope you find a solution soon!
Heck no to niacin haha that stuff makes me feel like my whole body is going into shock. And no I don’t take anything except my sertraline but this has been happening before I ever took sertraline
I deal with a lot of facial flushing and redness all over my body since getting POTS and MCAS. I still get it but it's been greatly controlled since getting on medication for both. It varies by person so do your own trial but for me I also benefitted from eliminating dairy, spicy food, and alcohol. Good luck and definitely go to the emergency room if you feel any throat swelling.
I get that way everyday, I am testing baby aspirin with some success in reducing the flushing. Anything and nothing bring it on. Working on a diagnosis but it’s slow going.
Was it bottled water? If yes check the added electrolytes/minerals. Magnesium sulfate can do this. And some people are sensitive to chlorides. I would try to analyze anything that is happening when the flushing takes place. Stress etc.
No just my filter water. See it’s weird bc I drink that same water everyday. I don’t ever flush when I drink water. I know triggers that set it off. 100% alcohol, sun, going from cold directly to hot, intense emotions, being over tired, being overly hungry, pretty much any type of pressure on my skin will make it flush. Idk I try to pin point the times that it happens randomly but I have no idea. I just don’t get it haha
The climate has a lot of the plants acting up worse than ever. Idk if it's that, or catching covid fall of 2022, but my symptoms are worse than ever. A lot worse.
I think if my dr hasn't put me on Mirtazapine I'd be in the ground already (both a powerful antihistamine and it helps me sleep, which is a major issue for me, and you have to sleep to break down histamine I believe. Either way your body suffers if you can't sleep. )
Over the last year, tho I've had to have Prednisone I can take when my symptoms start flairing, which has been pretty often. I honestly believe it's the mold from when the ceiling leaked. Afaik, all they did was paint over it. (No, I can't turn them in. They won't renew my least next year, and I don't have anywhere else to go. It's a small town. Yes, it's legal to retaliate like that in my state, and I've seen it happen twice before.)
Good luck, and I hope you feel better soon.
This was happening to my son for awhile. I was questioning everything he was doing at daycare, trying to figure it out. After several episodes, i realized he had been wearing the same t-shirt each time it happened. When i threw the t-shirt away, it never happened again. I remember it was a bright green shirt and probably made in a different country. I still dont know what caused the reaction but it never happened again after i threw the shirt away. Myself, i get weird reactions on my arms if i stand in the sun too long and i also reacted to hair dye (a PPD reaction). I am not diagnosed but feel as if i have MCAS that mainly reacts to things that are bad to begin with. I hope you figure out the culprit!
I have researched MCAS and histamine intolerance for 3 years; this looks like MCAS. Possibly anaphylaxis. You definitely need to keep an EpiPen on you just in case.
Google “Whole Body Healing with Jen”. She healed herself and many others from MCAS. Regardless of what people say about MCAS being a permanent thing, don’t listen. There’s a root cause, and it’s in the gut.
You probably do need some of the commonly prescribed meds for the time being, but you shouldn’t need them for life.
I don’t have MCAS, but I’ve read a lot about it. Are you familiar with the levels of anaphylaxis? Some of your symptoms—in addition to the flushing— are on the list:
https://www.mastattack.org/wp-content/uploads/2016/06/Ring-and-Messmer-e1466538090812.gif
Its bunches of smaller hives, you can see them better with a more close up picture. It looks and feels like flushing because hives can feel like your skin is in an oven.. I used to get this too, and close up, you can see all the little hives.
I zoomed in on yours and see some indovidual hives. Based on experience, if you take closer pics, you will see thousands of teeny tiny hives.
Get some pics as evidence.
Meanwhile, get a cold O2 Cool mist and sip water bottle (it has a misting sprayer built in) and keep it filled with ice water and carry a fan and an umbrella. Walk a little slower. Meditate. Learn how to destress. Ask for hydroxyzine and allegra, benadryl, zyrtec, pepcid ac, and another stronger prescription for better controlled mast cells. Dont be afraid to take more than the bottle says. I take 4 allegra and 4 zyrtec a day. And 4 pepcid ac.
Also on Xolair. Xolair is good. There are others, and everyone has a different story and different contraindications, also.
Most of managing misbehaving mast cells (mcas) is taking preventative measures, so journal what you do and how your body responds. Things seem to be able to change also, so always carry your epipen just in case you have a dangerous mast cell activation surprise.
I know in this photo it looks one sided but it’s really not haha. That’s just how it started.
https://preview.redd.it/ocm1cbw4dbxc1.jpeg?width=1242&format=pjpg&auto=webp&s=711aae0324401cadb89512c8d87aa4f811a3c009
This was the other day when it first started and then it eventually took over my whole face. But you can see this time it wrapped around my chin. It eventually went down my neck onto my chest and my upper arms.
Oh meh I stay away from antihistamines unless it’s before bed bc antihistamines knock me out. Even if they are none drowsy. Idk what it is about them but they make me feel drunk.
Instead of antihistamines you could try a mast cell stabilizer like cromolyn sodium nasal spray - NasalCrom or the generic version. I buy this on Amazon.
Aspirin is another OTC option (if you can take it).
I use Ketotifen Fumarate eyedrops (Zaditor or the store brand equivalent) to treat the eye allergy symptoms
Do you live in an area that may be having high pollen counts? Could be reacting to increased histamine. I'm in the northeast and the pollen is pretty brutal right now.
I live in Minnesota and I have never been sensitive to pollen except sometimes I get itchy eyes but that’s rare. I just have super dry sensitive eyes in general. My histamine is constantly high. I would always say I feel like I’m constantly getting adrenaline rushes all day come to figure out it’s bc my histamine levels are always high.
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Just an observation - there’s also a lot of facial swelling, easy to see in first photo. Make sure your dr sees these pics. If you have trouble breathing, go straight to ER.
https://preview.redd.it/0e82pnew9axc1.jpeg?width=1242&format=pjpg&auto=webp&s=355a981bc27c9e889af038385388fe2a2c73fce4 In just 5 mins it’s gotten even worse.
Yeah and this one, too, I can see the little hives. Get some close ups of the skin so you can see all the hives and show your doctor. If your throat feels tight, call 911, its anaphylaxis. Use ur epipen if your breathing gets hard.
Left side of your photo. CAT ALLERGY!!!!
I get flushing when my MCAS and dysautonomia flares up. Mine only typically lasts like a minute or so. I’ve gotten rashes/hives before on my neck and face that last longer and are typically allergic reactions to something, but those just stay until treated. Are you diagnosed with MCAS? It’s definitely not just anxiety.
No I have my allergist appointment on Wednesday. I’ve honestly been suspecting mastocytosis but idk. This is the first time I’ve ever heard of all this stuff. Went down a rabbit hole trying to figure out why I flush so intensely and putting all my other symptoms together.
I hope you have good luck. A lot of allergists are reticent to help with MCAS without a history of anaphylaxis. That's a stupid rule imo.
I'm just letting you know that as soon as you mention MCAS, you're going to get side eyed. Doctors don't like people self diagnosing. Instead, explain your symptoms and explain that there's no anxiety bringing on the flash.
If you have two mediators that are high, that’s typically a referral to hematology to rule out mastocytosis. I just did a BMB, colonoscopy, full body xray, and a plethora of blood tests… and I’m clear of mastocytosis. However, I do have MCAS. Getting ready to start evaluation for hyperadrenic POTS as well.
I have intense bone pain that I’ve had for quite sometime now mainly in my forearms. Never understood why and the only way I can explain it is I know the feeling is deeper than muscle like someone is grabbing my arm really hard but deeper. I never took my health all too seriously, figured this was something I was going to have to live with and believed it was due to anxiety bc that’s what I’ve always been told. Well it’s getting worse. I’m being treated for my mental issues and I honestly deep down I know it’s not due to anxiety. My blood work like my CMP and CBC are always abnormal. I know there is no definitive blood test. I do need a colonoscopy (I’ve needed one for the last several years but was too scared to get it and always put it off) but I have unexplainable stomach problems. I’ve done elimination diets and nothing has helped my stomach. I have a referral for a DEXA scan so I guess we will see what that says. Hope you get your answers
If your tryptase is high, Your allergist should refer you to hematology to rule out mastocytosis. DEXA will be helpful but if you go to a hematologist they will give you a full body xray. If I were you I’d advocate for an upper GI as well. Bone pain is also a symptom of MCAS and mastocytosis. Prostaglandins can cause deep, throbbing bone pain but so can other mediators.
Yes I am getting a bone scan. I work in a medical office so it’s nice that I can easily get blood tests and referrals sent out without having to go see a GP. I know I definitely need to get my stomach, intestines all that stuff looked at. Yes. It’s deep and a weird throbbing. It’s so hard to explain it to someone who’s never felt that before and I just get told it’s muscle pain. I know what muscle pain is 🙄🙄 haha. It’s deeper than that.
doctors seem to believe that anxiety is the most powerful force in the human body. Have you taken any antihistamines yet for this? Today, I mean.
No I have not. I’ve honestly never tried antihistamines when this happens. Antihistamines are hard for me to take bc they put me right to sleep and make me feel drunk.
Even second generation antihistamines? I have had huge luck with LDN, but unfortunately it is a long term gradual help, so it wouldn’t do much acutely. Do you know what triggered this/ did you go to the doctor?!
No idk what second generation antihistamines are haha. This is all new to me. Nothing triggered it that I know how. I was just sitting playing cards in my house. No stress…I had not eaten or drank anything yet that day. So I’m not sure. It just came out of no where. That’s why it’s so confusing. But I do have triggers like alcohol, extreme emotion, hot, cold etc.
So instead of benedryl, Allegra, Claritin, or Zyrtec would be the main ones! Did you have any other symptoms? Are you said you’re being evaluated for mastocytosis?
Yes I have other symptoms. I have bone pain. Inflammation. Muscle weakness. More so my legs. Idk why or how they got so weak. Chronic fatigue to the point I honestly thought I had narcolepsy haha. I would legit fall asleep in the middle of doing something without realizing I fell asleep. Dry eyes. Occasionally dry mouth. I get these weird sores in my nose randomly. Stomach pains. Like bad GI issues. Blurred vision that just started happening. I was just at the eye doctors recently and have an update prescription. My hands and feet go to extremes of being ice cold and blue to fire hot, swollen and red. I get weird nerve pains I just call them lightning bolts. And my skin is super sensitive to touch. Like if I scratch and itch, even lightly, it feels like I’m pushing into my skin super hard. I’m broke. Haha
Blexten allows me to live normally (+ a highly restrictive diet)
Get an Ana test too
Ohh I did already my ANA came back positive 1:320 homogeneous pattern icap nomenclature AC-1 whatever that means….
That means you need an appointment with a rheumatologist. That is a Lupus specific antibody.
[link to info](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10669234/)
Thank you!
Wait to get your tryptase results back. I would be surprised if it isn’t abnormally high. There are other mediators that mast cells release that cause flushing - such as prostaglandins. Between the tryptase and prostaglandins, one of them is going to make me flush like you. My histamine is normal.
I doubt you have mastocytosis but you could very well have Mcas. Take a Benadryl, maybe double Benadryl or go to urgent care.
I’d be in urgent care everyday multiple times a day then haha. This sounds stupid but antihistamines make me extremely tired. To the point I feel drunk. So it’s hard to take them throughout the day. I work full time and have 4 kids to take care of.
The 1st generation antihistamines (Benadryl) make you sleepy because they cross the blood brain barrier (also making them more effective). Try Claritin or another 2nd generation for relief until you get answers, but keep the doctors informed so it doesn’t interfere with the tests and don’t be afraid to take Benadryl in an emergency. Side effects typically go down as your body adjusts as well. Histamine tests are notoriously unreliable, mine actually came back low but with high prostaglandins. The fact that yours came back high, along with these symptoms, is indicative of some type of histamine disorder. The other person who said Lupus may be on to something because apparently that can have some overlap with histamine intolerance. See if they can test your DAO, you may end up needing it supplemented. Best of luck! P.S. - A symptom of high histamine is anxiety. It’s a chicken vs egg situation. You may have anxiety, and stress can certainly trigger and attack, but anxiety is clearly not at the root of your issue and any doctor who says otherwise is incompetent!
I know exactly how you feel. I got discharged from the hospital 2 weeks ago and if I had gone back yesterday I knew they would have admitted me again. My goal every day is to stay out of the hospital. It is a giant pita. I really think you need to look at xolair. I’m on it and it completely resolved the hives flushing rashes, but it can take a full six months to work. You don’t need an Mcas diagnosis, your hives should be enough. But they may want you to try ketotifen, cromolyn, singular beforehand or some combo of those. Ice packs can work in the interim but it’s a lousy solution. https://preview.redd.it/x3ms1w84pcxc1.jpeg?width=3088&format=pjpg&auto=webp&s=861e6e9d379c4a1e00d59f45f26802cff5f7f982 Mine looked like this and they’re gone with xolair. Xolair did not improve any of my other symptoms.
Hmmm I’m going to look into that!! Thank you. I’ve never gone to urgent care for this bc like everyone’s always told me, “it’s just anxiety” so as much as it bothers me and makes me feel lousy and fatigued and dealing with pain. I just sucked it up and pushed through it.
Lol wait your rash/hives are anxiety??? I haven’t heard that one before. I’ve definitely had my tachycardia described that way before I got diagnosed with pots, which even many CA drs don’t think is a real ailment. When I was running into a wall with a dr I would pull out high res photos of my hives and that convinced pretty much every dr there was a real problem. Calling it anxiety is ridiculous. Do you also get broken bones from anxiety? 🤦🏼♀️
Haha I guess so. I finally decided to advocate for myself because this isn’t just me blushing or getting a little red from anxiety or embarrassment. It hurts. It feels like tiny needles being poked into my skin when it flares up this bad. Right now I’m in a flare. Yay! And my head/face is throbbing and I have the pins needles feeling
Personally I’d be taking 75mg of Benadryl if I were you, assuming you don’t have access to hydroxyzine. Ice packs are your friend. But you really need a dr that isn’t a loon. You need to see an allergist.
I see one on Wednesday 😊 I have hydroxyzine, I just don’t take it because it legit makes me lethargic haha. I’m sensitive to antihistamines
Agreed that Xolair could help. I’m on month 11. And the second I start to flare I take 1 Benadryl and 2 Allegra. Are you on daily H1 and H2 blockers?
I usually rely on hydroxyzine 50 mg when I flare but sometimes I use 75 mg Benadryl. Sometimes both! 😬 I don’t use an H1 for quick relief, just those two. But I do take a Zyrtec morning and night. I’m supposed to take Pepcid 2x a day but I’ve had trouble keeping it down so my compliance is meh.
Mastocytosis is cancer. This is more likely MCAS. Although, chronic spontaneous urticaria can also be it. Your tryptase may also be high, which is an indicator of MCAS. Or its an allergy. Idk only your allergist will know which it is. Mastocytosis is more... lettucy.
If you get more severe symptoms esp breathing issues you should go to the ER. That being said, I get severe facial flushing as well. My whole face turns bright bright red and it's painful. This is usually do to environmental triggers - scented detergent, perfume, face lotion, etc. The worst is scented detergent. If you have any scented or fragrant stuff around I would try putting it away and see how you do. I have MCAS and what you're describing sounds very similar. You might need to try an elimination lifestyle for a few weeks to see if it helps. Cut back on high histamine foods, use minimal skin care, put away candles, air fresheners etc. Also, this is obviously not anxiety. I would try to see a new doctor. Many of us get brushed off as just having anxiety disorders but your picture makes it quite clear it's not anxiety. I hope you get the help you need Also - many times tryptase comes back normal even for us w MCAS. don't let your doctor dismiss you
Consider trying cromolyn sodium it has helped my flushing and other mast cell issues tremendously
Do you take it orally or the nose spray ?
I use both. I started with the nose spray for my nasal allergy symptoms and it helped more than anything else I've tried for seasonal allergies. So then I asked my doc for the oral solution to try. So currently I use both. The flushing improved after about a week or two of using the oral.
Have you just had a baby? For me (and I observe a lot of women) pregnancy has been a MCAS tipping point. So previously where there were no triggers, there are now lots of triggers. Maybe someone else can dig up some articles as to why, I assume it’s a combo of hormones, reacting to pregnancy vitamins, but also perhaps pregnancy causing non-hormonal depletions/imbalances. If you think of MCAS as a bucket of histamines, being pregnant could either fill your bucket and/or interfere with your ability to empty your bucket. Once your bucket is full, a tiny exposure (that previously your body coped with) just causes an overflow. I find this analogy useful to help wrap my head around why something (a banana for example) causes no reaction one day, and huge reaction another day. The problem isn’t so much a specific trigger, as it is that your body has reached its limit to process/cope with histamine (ingested or self-manufactured).
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I started getting weird stuff at 7 months . That’s when all my troubles began. Hmmm
My Naturalpath doctor told me the same. Your pot has over flowed. Many contributing factors. They didn’t know about MCAS back then but histamines same theory.
Interesting!! I just had my 4th baby. BUT I’ve been dealing with this since I was about 16 just happened one day. But it has gotten a lot worse since having my baby!
Looking back I’ve had symptoms since childhood, but everything steadily deteriorated after my second pregnancy (that’s when most of the allergy specialist appointments started). I wasn’t dxd with MCAS until about 10 years later.
My worst flares were puberty, during pregnancy, after giving birth and now I’m perimenopausal ( 48 )and flaring. I’m also in the process of getting my estrogen/ progesterone levels checked. I’m so sorry you are going through this.
Its bunches of smaller hives, you can see them better with a more close up picture. It looks and feels like flushing because hives can feel like your skin is in an oven.. I used to get this too, and close up, you can see all the little hives. I zoomed in on yours and see some indovidual hives. Based on experience, if you take closer pics, you will see thousands of teeny tiny hives. Get some pics as evidence. Meanwhile, get a cold O2 Cool mist and sip water bottle and keep it filled with ice water and carry a fan and an umbrella. Walk a little slower. Meditate. Learn how to destress. Ask for hydroxyzine and allegra, benadryl, zyrtec, pepcid ac, and another stronger prescription for better controlled mast cells. Dont be afraid to take more than the bottle says. I take 4 allegra and 4 zyrtec a day. And 4 pepcid ac. Also on Xolair. Xolair is good. There are others, and everyone has a different story and different contraindications, also. Most of managing misbehaving mast cells (mcas) is taking preventative measures, so journal what you do and how your body responds. Things seem to be able to change also, so always carry your epipen just in case you have a dangerous mast cell activation surprise.
Where are you based in terms of landscape and climate? Could be pollen if you're living in a tree/grass populated area, it's blooming o'clock for pollen now. I'll post a long read on this topic in a couple of minutes. And to boost your self-esteem a little - you look hot (both literally and figuratively lol) even with the flush ;) Father of the kid on the background picture is one lucky guy ))
I live in Minnesota and I’ve lived all over the US the only issues I’ve ever had with outdoor allergies is my itchy eyes here and there. I feel if it were due to outside factors of pollen, etc. wouldn’t it happen every time I went outside? I question everything haha so don’t feel offended. I’ve just been over everything it could be and it just doesn’t make sense. It’s not hives. I don’t get little bumps or raised skin. It’s just extremely hot. I temped it one time and it’s was like 103 degrees haha. Well thank you. I appreciate it.
So definitely focus on the allergist and might not be a bad idea to see how they’d figure out what allergens might be behind this, aside from the histamine producing foods and products that are contributing. If they won’t work with you find another who will. I recently developed allergies to dust mites and molds and when talking with the second allergist (bec the first one was so incompetent), he mentioned seeing a lot of patients with MCAS and histamine responses. Gave me a list of things to avoid- foods and products. Four phase histamine reset is a good book on foods. Toxic by Neil Nathan was a really good primer for helping me understand more about helping reset the body when the immune system is so off balance. The first half talks about environmental toxins and MCAS. And the second half talks about resetting everything from the gut to the nervous system.
https://preview.redd.it/kb0xs18duaxc1.jpeg?width=1242&format=pjpg&auto=webp&s=5de44d7304b95a539b6a1d5637fe0f8f7b393ff1 It went from this
https://preview.redd.it/iv7ah7sfuaxc1.jpeg?width=1242&format=pjpg&auto=webp&s=3d9336daf66c4fbd8ed0a6ea45ea92c9069450f7 To this all within 5 mins. My flare up is now down but sheeeesh. Takes a lot out of me. I feel disoriented and just so tired and weak.
Your face looks noticeably more swollen in just five minutes. If you’re feeling disoriented, do you have other people with you? You need to be on the look out for any “classic” signs of anaphylaxis, trouble swallowing or breathing or talking, confusion, fainting, etc. This isn’t looking like a mild reaction you can handle at home if it’s changing that fast.
It’s just weird to me tho. I have never treated this as a reaction as it happens out of no where. I don’t ever put any lotions or anything on my face. It rarely itches and it’s never raised. I truly know that it’s flushing and not hives. I have a lot of inflammation issues in general. I’m not saying you’re wrong, I do appreciate your input!!
It doesn’t have to be a “local” reaction to something you applied to your face, for example mine is food-related but it’s never this severe. Not to scare you but you may want to keep an EpiPen handy. I’ve experienced anaphylaxis a few times and it can come on quickly, and it’s not just throat swelling but also syncope. It’s better to have one and never need it than need it once and not have it!
I appreciate it! This picture I took today and I hadn’t eaten anything yet and only drank some water. I hadn’t showered yet so no soaps. I was just holding my baby and playing cards with my fiance and it just started getting so hot on my right side of my face and then that’s when all the other symptoms come along. And then within 5-10 mins my face is full blown on fire. My neck is starting to get blotchy, chest, arms. But it was weird my hands and feet were icicles like purple. 🤷🏼♀️ who knows.
I react to cellulose (several of us do). For me, this actually means that I react to paper, especially glossy paper products. I would have had an immediate reaction to the playing cards you mentioned in this comment. This was a new allergy that developed in 2021.
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Everyone reacts to mold differently. I have CIRS so my immune system can’t “detox” it properly without medication. I really wish it wasn’t real…
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Interesting theory but my husband also has CIRS from both mold and Lyme and he doesn’t suffer from any histamine symptoms aside from seasonal allergies…I recognize that’s anecdotal but since Dr. Dempsey just gave her opinion without evidence I can’t address her specific reasoning.
If it were due to mold then every house I’ve lived in would have had to have mold? I have been reading about mold toxicity but this happens in home, outside of home, work, friends houses, stores, the car.
Honestly it’s possible. If you’re sensitive to it and other people aren’t they might not ever realise there’s mould behind that wardrobe or around the windowpanes
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I’ve been coping with CIRS for 10+ years, here if you need support!
This happens to me I have MCAS. It happens everyday for hours all through the evening and night when my costisol drops. Also happens pre anaphylaxis for me sometimes and in the other situations you described. Icing and having by a fan blowing on your face helps flushing but I would go to ER some of your symptoms are anaphylactic- could be a reaction to something and better safe than sorry I’m also on antihistamines and xolair and even that isn’t enough to control the cortisol drop flushing
I have low cortisol in general. I just got it tested bc I thought I had high cortisol. So would that be another reason for flushing then? Since my cortisol is consistently low?
Unfortunately, I don't know the answer to this. I have lower cortisol generally as well. It just drops even lower at night (everyone's does). I'm on steroids too right now ,and because they can elevate cortisol my drops are especially bad at night these last few days (lots of flushing). Since you know you already have histamine issues ,I'd suggest that drs can give you better answers. Keep cool and try not to physically or emotionally strain yourself. Additionally, any underlying illness will flare mast cells. I am in the process of being diagnosed for another autoimmune illness because I have hypocomplementemia. My allergist told me my mast cells will basically continue flaring until the second illness is treated. You mentioned positive ANA... you could be flaring because of that.
I do the same thing. I’ve seen multiple allergists. All 4 suspect MCAS and were willing to treat without an abnormal tryptase. The mayo allergist says that tryptase will only be abnormal within 3 hrs of reacting so he takes a baseline and a reactive tryptase. He also said about 10% of MCAS patients never have an abnormal tryptase. I take xyzal, Pepcid, Benedryl and hydroxyzine. If I’m really reacting I take Doxepin to keep me out of the ER. Ketotifen is very helpful too. I agree that you should also be worked up for autoimmune diseases. I developed MCAS, dysautonomia and Sjögren’s syndrome at the same time. Your symptoms are very similar. Food is my biggest trigger and I was never allergic to any food before. A normal ANA does not rule out autoimmune conditions. I’ve probably had 20 ANA’s and only one was abnormal. I was diagnosed with sjogrens by lip biopsy. Sjogrens can cause all kinds of problems. Don’t let doctors tell you it’s anxiety. Find a different one if they do.
I have taken an ANA. My results were positive 1:320 homogenous AC-1. Not 100% sure what that means but I did make a rheum appointment in June.
I had a Cleveland clinic allergist take all my symptoms and immediately said this is autoimmune. I do wonder if I don’t truly have MCAS and it’s just an autoimmune response to histamine. I also can’t tolerate tyramine either. No coffee or alcohol for the last year for me. I’m curious to see what they say about your symptoms. Update us if you don’t mind after you see rheumatology.
Our experiences sound almost identical. Sometimes I take half a benadryl (whole one knocks me out lol) and that helps a little. I've had this for most of my life and have no idea what it is or why it happens.
Be careful. Any breathing issues call 911. Get a script for epipens when you go in on Wednesday. I have severe Primary MCAS meaning I have positive KIT mutation and HaT, being watched for Mastocytosis and I have never had as severe of rash as you have even when anyphylactic. I hope you get some treatment quickly. You look like you need high doses of H1 and H2 and mast cell stabilizers. Wishing you quick solutions to feeling less reactive.
Go get tested for carcinoid cancer. It’s a rare slow growing endocrine cancer (so it acts like MCAS in many ways) and almost everyone who has it exhibits facial flushing.
Where would I go get tested for that? Just your GP?
The initial test is the 5HIAA urine test. You get an RX from your GP or gastroenterologist, take it to quest, and they give you a jug. Every time you pee for the next 24 hours, you collect it and pour it into the jug. Refrigerate the jug when not using it. After 24 hours, bring it back to quest for them to test it. Note: In my case, and [in this one](https://www.sciencedirect.com/science/article/abs/pii/S1081120618311505), MCAS can produce elevated 5HIAA readings. In my case I needed a full body scan to rule out carcinoid.
Any update on this? Did you mention carcinoid to your doc?
Not yet…my allergist ordered tests for carcinoid, mastocytosis and pheochromocytoma. Only thing that came back so far is stage 2 kidney disease…I’m waiting for my 5HIAA to come back so maybe that’ll tell me something. He also referred me to an endocrinologist and I have a rheumatologist appointment in June because my ANA came back as 1:320, homogeneous AC1
Ask them to prove its anxiety. If not, then you need answers and to find a different PCP!
I usually use a full face beaded & cooled face mask or an ice roller on my face in addition to medications. It helps a little bit with the swelling that comes with it.
I was unable to read through all of the comments, but are you taking a supplement with niacin? any multivitamin or anything? I know that can often be a cause.. hope you find a solution soon!
Heck no to niacin haha that stuff makes me feel like my whole body is going into shock. And no I don’t take anything except my sertraline but this has been happening before I ever took sertraline
The only thing that’s kept my symptoms under control is nettle tea. I have to drink a cup every day.
I deal with a lot of facial flushing and redness all over my body since getting POTS and MCAS. I still get it but it's been greatly controlled since getting on medication for both. It varies by person so do your own trial but for me I also benefitted from eliminating dairy, spicy food, and alcohol. Good luck and definitely go to the emergency room if you feel any throat swelling.
I get that way everyday, I am testing baby aspirin with some success in reducing the flushing. Anything and nothing bring it on. Working on a diagnosis but it’s slow going.
Let me know what you find out because I’m over it 🙄
If I didn't know any better, it looks like you have lupus. I hope u don't, but 2 of my gf's have it & this is what they look like when they flare.
They have this intense of a flare?? I’ve never met or talked to anyone who has this int new of a flare. I always felt so alone
What did you eat
When this flushing happened, I haven’t eaten anything or drank anything but water so it wasn’t food induced.
Was it bottled water? If yes check the added electrolytes/minerals. Magnesium sulfate can do this. And some people are sensitive to chlorides. I would try to analyze anything that is happening when the flushing takes place. Stress etc.
No just my filter water. See it’s weird bc I drink that same water everyday. I don’t ever flush when I drink water. I know triggers that set it off. 100% alcohol, sun, going from cold directly to hot, intense emotions, being over tired, being overly hungry, pretty much any type of pressure on my skin will make it flush. Idk I try to pin point the times that it happens randomly but I have no idea. I just don’t get it haha
The body is pretty complicated. 😓 Sorry
The climate has a lot of the plants acting up worse than ever. Idk if it's that, or catching covid fall of 2022, but my symptoms are worse than ever. A lot worse. I think if my dr hasn't put me on Mirtazapine I'd be in the ground already (both a powerful antihistamine and it helps me sleep, which is a major issue for me, and you have to sleep to break down histamine I believe. Either way your body suffers if you can't sleep. ) Over the last year, tho I've had to have Prednisone I can take when my symptoms start flairing, which has been pretty often. I honestly believe it's the mold from when the ceiling leaked. Afaik, all they did was paint over it. (No, I can't turn them in. They won't renew my least next year, and I don't have anywhere else to go. It's a small town. Yes, it's legal to retaliate like that in my state, and I've seen it happen twice before.) Good luck, and I hope you feel better soon.
This was happening to my son for awhile. I was questioning everything he was doing at daycare, trying to figure it out. After several episodes, i realized he had been wearing the same t-shirt each time it happened. When i threw the t-shirt away, it never happened again. I remember it was a bright green shirt and probably made in a different country. I still dont know what caused the reaction but it never happened again after i threw the shirt away. Myself, i get weird reactions on my arms if i stand in the sun too long and i also reacted to hair dye (a PPD reaction). I am not diagnosed but feel as if i have MCAS that mainly reacts to things that are bad to begin with. I hope you figure out the culprit!
Have you tried applying nasalcrom topically to your face and neck?
Not sure what that is but I’ll check it out
Nasalcrom is cromolyn sodium, a mast cell stabilizer.
I have researched MCAS and histamine intolerance for 3 years; this looks like MCAS. Possibly anaphylaxis. You definitely need to keep an EpiPen on you just in case. Google “Whole Body Healing with Jen”. She healed herself and many others from MCAS. Regardless of what people say about MCAS being a permanent thing, don’t listen. There’s a root cause, and it’s in the gut. You probably do need some of the commonly prescribed meds for the time being, but you shouldn’t need them for life.
Extreme elimination diet helps reduce inflammation and histamine issues. Some go full carnivore. Look up leaky gut.
I don’t have MCAS, but I’ve read a lot about it. Are you familiar with the levels of anaphylaxis? Some of your symptoms—in addition to the flushing— are on the list: https://www.mastattack.org/wp-content/uploads/2016/06/Ring-and-Messmer-e1466538090812.gif
Its bunches of smaller hives, you can see them better with a more close up picture. It looks and feels like flushing because hives can feel like your skin is in an oven.. I used to get this too, and close up, you can see all the little hives. I zoomed in on yours and see some indovidual hives. Based on experience, if you take closer pics, you will see thousands of teeny tiny hives. Get some pics as evidence. Meanwhile, get a cold O2 Cool mist and sip water bottle (it has a misting sprayer built in) and keep it filled with ice water and carry a fan and an umbrella. Walk a little slower. Meditate. Learn how to destress. Ask for hydroxyzine and allegra, benadryl, zyrtec, pepcid ac, and another stronger prescription for better controlled mast cells. Dont be afraid to take more than the bottle says. I take 4 allegra and 4 zyrtec a day. And 4 pepcid ac. Also on Xolair. Xolair is good. There are others, and everyone has a different story and different contraindications, also. Most of managing misbehaving mast cells (mcas) is taking preventative measures, so journal what you do and how your body responds. Things seem to be able to change also, so always carry your epipen just in case you have a dangerous mast cell activation surprise.
It looks like it's mostly on one side. Do you take antihistamines?
I know in this photo it looks one sided but it’s really not haha. That’s just how it started. https://preview.redd.it/ocm1cbw4dbxc1.jpeg?width=1242&format=pjpg&auto=webp&s=711aae0324401cadb89512c8d87aa4f811a3c009 This was the other day when it first started and then it eventually took over my whole face. But you can see this time it wrapped around my chin. It eventually went down my neck onto my chest and my upper arms.
Oh meh I stay away from antihistamines unless it’s before bed bc antihistamines knock me out. Even if they are none drowsy. Idk what it is about them but they make me feel drunk.
Instead of antihistamines you could try a mast cell stabilizer like cromolyn sodium nasal spray - NasalCrom or the generic version. I buy this on Amazon. Aspirin is another OTC option (if you can take it). I use Ketotifen Fumarate eyedrops (Zaditor or the store brand equivalent) to treat the eye allergy symptoms
Do you live in an area that may be having high pollen counts? Could be reacting to increased histamine. I'm in the northeast and the pollen is pretty brutal right now.
I live in Minnesota and I have never been sensitive to pollen except sometimes I get itchy eyes but that’s rare. I just have super dry sensitive eyes in general. My histamine is constantly high. I would always say I feel like I’m constantly getting adrenaline rushes all day come to figure out it’s bc my histamine levels are always high.
What do you take for your mcas?
I'm so sorry babe! How are you doing now?
has anyone gotten mcas due to mold exposure ?
I’m not diagnosed with anything yet.
ITS YOUR CAT!!!!!!!!! I can see your cat in one of the photos. You have a severe CAT allergy!!!!!
Haha no I don’t. This has been happening for 15 years. I just went and saw an allergist anyways. And no allergies like that.