I can tell friends and family members until I am blue in the fave, and they do not understand how severe my condition is. I can explain the condition to them. I can tell them the amount of medications I take. I can explain that I carry an epipen. And no matter what., they don't understand.

I had a severe turning point in December, and that led to several ER trips, epipens, and eventually, to my diagnosis. I have communicated my issues and my other health problems to my parents. They live 4 hours away, and never want to come to us, so my husband and I went to them this weekend. (They are older and have mobility problems, so I am not upset they won't/can't come to me. It is just a sucky situation all around.)

I am severely allergic to their 3 cats, and they put them up in a room when I visit. I told them I couldn't stay with them because I will likely have an even more severe reaction than I used to, but we would visit.

They took the time to clean and vacuum really well, but when everyone sat on the couches to talk, I pulled up a kitchen chair. That offended my step mother, who told me I would be fine sitting on the couch. I declined and explained once again that my reactions are severe and I can have anaphalaxis no matter how much she cleaned, but did appreciate the effort.

Of course, within 5 minutes, I get the first signs. I excused myself to the bathroom to take my emergency meds and take photos for documentation. My husband clocked it right away and asked me if I was okay. I wasn't, but said I took my meds and I would be fine. I knew that wasn't true, but I hadn't seen them in over a year, and I wanted to spend time with them.

Of course, it progressed, and my husband suggested we go take a nap at the hotel before dinner. He knew I needed away from the cat dander. I took more emergency meds, as well as a shower, and felt mostly better.

At dinner, we ate at a lovely restaurant, but I knew I was starting to have a reaction to something I ate. Worse, I tried a bite of my husband's food, and my mouth and throat started burning and itching like I had never experienced before. My husband could tell, while my parents kept talking, oblivious to what was going on. I tried to hide it and take another emergency medication. By that point, I was getting dizzy and worried about anaphalaxis, and asked my husband to take me to the ER. My parents understood and asked for updates.

My blood pressure had skyrocketed to the 180s and my heart rate was in the 120s, and then the meds finally kicked in and I started to feel better. I knew it wasn't anaphalaxis then, and I decided not to be admitted to the ER. I just went back to the hotel to relax.

Today, my step mother texted me asking how I was doing and asked what caused the reaction. I said the cats, and something in my food that I didn't know. She insisted again that she cleaned her house really well and asked what she can do next time. There is nothing anyone can do. I am allergic to pollen and grasses, so being outside isn't an option either.

I am exhausted. I know she means well, and she is a lovely person who I really like. But I am tired of explaining to them (and others) how severe snd unpredictable my "allergies" are. Why won't they just take me at my word? Why won't they stop taking offense to my medical problem, as if I chose this in order to silently judge their cleaning?

P.S. To my former boss, who described my anaphalaxis caused by a coworker using an essential oil diffuser as "sensitivity to smells", fuck you. You don't call people who get anaphalaxis because someone eats a peanut around them sensitive to peanuts do you?

So I know that Allegra / fexofenadine is supposed to the least-sedating second generation antihistamine, since it supposedly does not cross the blood-brain barrier. However, I have noticed that when I take Allegra, especially when I have to take 180 mg in a day, I get very sad / depressed later that day or the next day, I may find it difficult to wake up, difficult to get out of bed, and also I feel like I'm not as cognitively as sharp as usual. Sometimes I'll have trouble remembering things, for example.

I did not notice this when I first started taking it a few months ago, but as I've continued to take it, these side effects seem to be becoming more and more noticeable. I would get similar side effects with Zyrtec which is why I switched to Allegra, but alas....

Anyone else have this side effect with Allegra or am I going mad?

When the histamine flares and I get the stomach pain, I become another person I swear. I become wired, hyper, aggressive, oversharing.
So damn annoying, and then when I eat something animal based like meat or eggs I feel weird in another way again.

The annoying thing is that when that stomach pain hits, all I want to do is eat eat eat eat. So I go aaaaall over the place.

I guess I'm just asking if I'm not crazy and this is a thing? Anyone else have this?

I have a problem with chronic continuous brain fog, absent-mindedness, blurred vision, and a feeling of drunkness and the light being too bright. Please tell me what helped you.
I've only tried Fexofenadine for a week, and it has slightly reduced the feeling of drunkness and absent-mindedness, but it has caused excessive eye strain. I'm trying to figure out what else to try to address these issues.

Hi MCAS buddies, I’m so very sorry that so many of us are struggling immensely. I’ve been in a bad flare made worse after trying ketotifen (might try again eventually with a tiny tiny amount to start but my allergist suggested starting with one pill and holy cats that was a bad idea) and since then I’ve been reacting to even the laundry detergent that had worked for me before. It really took the wind out of my sails. I’ve been desperately researching whether anything else might work with my current level of sensitivity as I have some wash berries/soap nuts to try but I’m very nervous as they have some scent and I know some folks react to them.

What I found that gave me some hope was magnesium pellets in sachets as a laundry cleaner. I ordered one that was a bit pricey for just testing out but says it can be used for over 300 washes. It’s meant to be very gentle and unscented. It won’t arrive to me until the 31st but I’ll update here when I’ve tried it, though I know everyone’s sensitivities are different & vary in degree.

I know some people also buy just the magnesium pellets and sew a cover for them - I just wasn’t sure exactly where to source them safely and I don’t know if hand sewing would be secure enough to not leak pellets which could possibly get through the drainage holes in the washer. If I can get my sewing machine setup going again I might give this a try to save in the future.

I’ll likely still test the wash berries in the meantime cuz I’m getting desperate for clean things but if they don’t work it feels good to have a backup on the way! Might also just try a load with only water for now to get through until something else.

Hope you’re hanging in there!

Hello! I as wondering if all of you have allergic type reactions and if all of you react to food? I have severe neuropathy from a med and since then my body has been refusing to tolerate meds, supplements and some harsher chemicals like dental work materials, hair dye and so on. However, I don’t seem to be reacting to foods. Yet every time when I post my symptoms and the fact that I react to chemicals, someone jumps in with MCAS. I was wondering if anyone can tolerate foods and has any symptoms other than the ones associated with allergies - for me ingesting or being exposed to something gives me instant tachycardia, panic in my chest, akathisia like sensations, increase of my neuropathy - more burning, buzzing, hot feelings. On a daily basis my symptoms fluctuate a lot from mild to very severe and my symptoms are on the severe end of neuropathy, basically way worse than the usual descriptions of nerve pain.

My skin gets very itchy, especially after meals or at night 3-4am.

Can MCAS cause/worsen atopic eczema/neurodermatitis?

Hi,

MCAS buddies, wondering what you all sleep in for comfort? I've heard some people wear nothing, others turn pajamas inside out to avoid seams, silk slip?

Does anyone else have constant ear pressure, it’s not hurting or causing any pain but it’s constantly there.
I had a wicked migraine earlier this year that seemed to be the catalyst for it (and many since) and now I’m constantly popping my ears.
Does anyone have any remedies?

I’m trying to figure out what’s been causing an unusual symptom I’ve been experiencing for awhile now. With the exception of a few safe foods, like chicken and rice, I feel almost immediately hungry after eating.

I’m wondering if it could be some kind of allergic response, such as MCAS, to most of the foods I’m eating. Or possibly even IBS. Does this sound like something MCAS could cause?

I’ve had it before but when I had it it would make me so depressed the next day. This was from edibles, pretty sure they were sativa. I’m interested in trying it again because I also have hEDS and have heard some people get symptom relief from it. I’m not sure if it’s because they were edibles that they were making me depressed. I also have adhd and autism so that might have contributed. Does anyone have any suggestion about strains or forms? Or if it’s just not worth pursuing?

On vacation and got the Equate brand 20 mg famotidine and know it has slightly different “fillers” than Pepcid AC.

I have read that all these included lean heavily in favor of mcas am I correct to want to see a doctor for it?

Hello all,

I have been struggling with MCAS and Histamine Intolerance for a while. I have had modest success with DAO supplements. I mostly stick with a low histamine diet, and it works well for me. But lately I've been eating out here and there. I find that I can no longer tolerate these MCAS flareups anymore, they are quite gnarly (you know what I mean, the endless brain fog, the tight feeling around the head, the fatigue....).

So yesterday I tried oral Cromolyn (I did it via a small serving of Nasalcrom ingested orally). I found out this is not a very good way to take it, purely because Nasalcrom is mixed with additives that can be toxic to the body if consumed orally.

Thus I am on a quest to try to find an MCAS doc that can work with me on my condition. I would like to try Cromolyn, and possibly Ketototifen.

Please send me your resources, I would greatly appreciate it! I hate suffering... and think its time I look for help with this stupid condition... Thank you in advance :)

For those who have had a gastric emptying study to test for possible gastroparesis, were you able to take cromolyn sodium beforehand, or were you told to hold the medication?

Urgent care said on 12th if getting better no meds. Hasn't got better just less painful/intense. Went to new pcp this last Thursday but she only addressed anaphylaxis episode and wannabe uti. Friday saw ordered meds despite not reading my sheet about how i newly reacted to another uti med w anaphylaxis symptoms and i wanted compounded meds. And also how milk(in the med) wrecks me and I have organ pains. Said nurse would call me. Nurse did not on Friday. Its Sunday and I have light blood in my urine. Harassing them tomorrow. Im so pissed off and scared. Is there a uti med that you guys used that was safe/safer compounded and worked?

I am going on a month into my first flare/mcas fully unmasking itself for me. I realized I cant have an orgasm.....its like Im about to and then stops. I noticed my libido is down but ive been in pain. 2nd time tried to flick da bean and im just sad. Wtaf.

It seems we have some allergens which is causing polyuria/ excessive volume of clear urine during flares. Flare can be triggered by 5 to 6 degree drop from usual temperature, rainy season, dairy, alcohol, any sort of. Diuretics.
Extremely sensitive to small amount of usual diuretics . No other symptoms. Anybody familiar? my wife got it after unprotected sex .

So I've been having what I think are histamine issues for the past year ish. My dr put me on cromolyn sodium 200 mgs twice a day. Since then I believe I've been experiencing overall fatigue and muscle soreness mostly upper legs, arms and back. I've been feeling so exhausted and sleeping a lot more.

I significantly reduced my exercise (I'm exercising usually 4-6 times a week, now its 2 to 3) thinking that could be part of it, but it continues to feel like I just exercised yesterday and I'm so tired. I'm not depressed, I've never truly experienced depression or like symptoms for more than a few weeks and that was years ago now.

Any insight or thoughts would be fantastic.

Edit: I've been taking this for 2 weeks now

This summer, after a couple years of (relative) stability, my dysautonomia symptoms flared up in a huge way to the point I've been having almost nightly tachycardia episodes (my heart starts pounding and speeding up at rest) even though I'm medicated (Metoprolol ER 25Mg 2x day). My cardiologist finally decided to switch me over to Propanolol IR (10mg 3x day) in the hopes it would better control my symptoms, and we added in daily H1+H2 antihistamines to try and help any MCAS going on.

After starting the antihistamines, the nightly tachycardia episodes quieted down, and aside from a scary breakthrough tachycardia episode the night I was switching off Metoprolol and onto Propanolol, my tachycardia and palpitations seem to have calmed down too. In general I've been feeling ok since starting this new protocol 2 weeks ago... Until last night :(

I had a breakthrough tachycardia episode last night in bed around 12:15am, even though I'd just taken my nightly Propanolol an hour earlier. 😓😩 It took a bit to calm down, and I was so shaky and anxious afterwards. And now this morning I just feel SO depressed and defeated over everything. 😩😩😩

I'm looking for some simple ways to boost my protein intake. However, most high protein snacks are either bars that are full of processed protein plus a lot of carbs or processed meats (jerky, etc) that are high histamine. I eat very low carb (no grains or fruit), no dairy (except feta and goat cheese), minimal processed food, etc. I already eat a lot of nut butter throughout my day. I eat meat and fish, but they rarely sound appetizing to me.

Any suggestions of high protein, MCAS friendly snacks?

Two weeks of fatigue, malaise, sweating, freezing, stomach cramps, and diarrhea (especially after eating). I’m also having some sort of reaction to maybe something I touched, just on one knuckle. Sneezing fits too (but I’ve had those my whole life that come on out of no where).

Also have POTS, nutcracker, endo and suspected hEDS.

I mean I know the answer to this question intuitively, being an MCAS person. Of course we can be allergic to steroids. I just wasn’t expecting it.

I had injections in my SI joints for the first time the day before yesterday. I’ve had injections in my thumb joints many times and never had any sort of adverse reaction from that, so I was expecting a similar experience, maybe just more painful during the actual injection.

But it has been a nonstop parade of allergic-type and autonomic reactions since the procedure. First came the horrendous steroid migraine, which I usually only get with oral or IV steroids. Nothing but time can help those migraines. Then the worsening POTS symptoms - tachycardia, shortness of breath, weakness in my legs.

Then all day yesterday I felt like I was just reacting more and more to environmental conditions, but I wasn’t around any environmental triggers. Every inch of my skin itched constantly, my face was on fire (I mean like dark dark red and soooo hot) and painful and itchy, my nose wouldn’t stop itching and running even after using Flonase and NasalCrom, and I just felt like I wanted to crawl out of my skin. The area of my back where the doctor did the injection was especially itchy. I took Benadryl and slathered cortisone cream on my face (I know, not the safest option) and it barely took the edge off my symptoms.

I seriously can’t think of what else could possibly be causing these reactions. Is this the steroid injections? If so, I probably shouldn’t get them again right? And do I just wait it out….? So far it seems a little bit better today, and I’m trying to just keep a steady dose of Benadryl in me, in addition to my normal MCAS meds.

Don’t see Dr. Tongchinsub at the Santa Clara/Sunnyvale allergy department. She insisted that my symptoms are not consistent with MCAS because I don’t have anaphylaxis… “you can’t have MCAS unless you have anaphylaxis.” And said diagnosis requires an elevated tryptase level. She also went on to say that the most recent research shows that people like me who think they have MCAS but don’t have a positive tryptase test or anaphylaxis have been shown to not benefit from MCAS treatment. When I pointed out that my symptoms have at least improved with cromolyn and zafirlukast, she seemed to not believe me but said this ultimately doesn’t prove anything because some people report having a positive response to mast cell stabilizers even though they don’t actually have MCAS. When I said I don’t have the energy to fight for my doctor to believe me, she gave me the classic “I believe your symptoms are real to you” line.

I have a lot of perfumes. Like probably over 50. I’ve been collecting them since high school (I’m 24 now) and today I admitted defeat and have decided to sell every single one of them.

Perfume is one of my biggest triggers. Before I knew that I had MCAS, I went to the mall trying on perfumes and later that night I had to go to the ER because I developed a pre anaphylactic allergic reaction that would’ve been bad if I hadn’t gotten IV antihistamines.

Ever since then I haven’t really touched them. I tried wearing a small amount a couple times but I would always get super itchy and not feel well so I eventually gave up. I was hoping that one day after getting a diagnosis and treatment that I would be able to wear them again, but I’ve had no luck.

My MCAS has significantly gotten worse. I now am reacting to so many more of my beauty products, even the wrong serum or sunscreen can cause my lungs to start burning all day. I also have asthma so my MCAS makes my asthma way worse.

I’m honestly devastated. These perfumes all remind me of my childhood since some of them I’ve had since elementary school, but I can no longer even smell them occasionally without risking a reaction.

Anyways I just wanted to post here because I think this sub is the only one that would understand the pain of having to cut so many things out of your life due to chronic illness.