I'm thinking back of the years leading up to this and I was so reactive ALL THE TIME. Everything bothered me, everything triggered me, everything angered me, I cried easily, I would overthink non-stop.
I had ptsd so put it down to that but it was so extreme. Like looping thought, couldn't let go of anything.
I'm now thinking it was mcas and histamine related. I had no control anymore.

That lack of control mostly made me think it had a physical cause.

I got neuropsych eval because i had an “anaphylactic episode” where i was found on my floor in excruciating pain, slurred speech, confusion, felt out of it. ever since ive had really bad memory problems. i thought i was going insane. BUT. apparently the memory issues are real. my verbal memory came back that i am in the 1%….. SIGNIFICANTLY impaired. I had these episodes where i get really confused and dizzy and feel like i may faint but i typically dont, get rlly shakes too. also feel like my body is like PANICKING but no emotional reaction, feels like veins are on fire. anyway. anyone got any clue whats going on? neuropsych said could be frim MCAS but mcas specialist said ah hell nah its notand referred me to neuro. idk bro why cant they agree. want answers. i am pre med neuro actually hahahah but i am looking at medically withdrawing because i am not functioning. when we did the Topf to estimate my IQ before whatever happened it came back as in 97th percentile and all other neurocog testing was super normal INCLUDING attention/executive functioning. so this isnt screaming ADHD and I am not stupid. Idk man im feeling discouraged🤣

my fur baby passed on friday and ive been a wreck emotionally since. my MCAS is easily flared by emotional distress so i smoke a lot of. weed and try to stay chill, but I;m looking for tips on how you ease symptoms when the distress is unavoidable?

The following new research on allergies as “sensory memories” is important. I also personally think it could have additional implications for those with autism who have sensory issues and mcas.

Researchers have uncovered a likely origin of our allergies
While bacteria and viruses set off immediate alarm in our immune system, allergies follow a different path.

“But until Sokol and her team published a study last month in the journal Cell, it remained unclear how this response builds over time. “The hypothesis was just: What if the neurons are developing a ‘memory’ of this allergen?” she said. “So we tried to build a model to look at it, and that’s what we found.””

“The researchers exposed mice to triggers, including the papaya-derived compound papain and dust mite allergens, and then examined how their sensory neurons responded. These exposures put the animals’ neuronal mitochondria, tiny structures that generate energy to power cells, into a “primed” and hypervigilant state. After additional allergen encounters, these cells triggered an even stronger immune response and more-severe itching.

This priming was not tied to a specific allergen. Mice initially exposed to papain also experienced a stronger reaction when treated with dust mite or mold allergens. That means this mechanism could give rise to a broad range of allergies over time. “Anything that could activate the same pathway activates this memory response,” Sokol said. This could explain why many people acquire allergies to a range of substances.”.

Source: Washington post
https://apple.news/AlLbWb-fzR56DxDLqToQykw

Hopefully this isn’t off topic but I typically only ever post negative things here so I thought I’d share a win. I haven’t been able to eat anything sweet that isn’t an apple for the last 8-9 months, and yesterday I had almost 1/3 of good sized bag of kettle corn with no reaction! It went so well I’m thinking of adding corn back to my list of safe foods (making it 6 now instead of just 5). It seems so minuscule but it was such a big win for me :) can’t wait until I actually get properly medicated and I can eat even more!

I'm wondering how much the weather is causing my symptoms to suck. I'm in Knoxville Tennessee and we were 80s and humid last week, now it's high air pressure, low was in the 30s last night and I've had sooo much pressure in my head, and just feel a whole body fatigue. Do weather swings fuck anyone else up?

This sounds stupid but does anyone else struggle with even believing they’re allergic to something or just the fact their allergic to so many things and no way it’s real or is it just me 😕

We put our central heating on for the first time this year the day before yesterday and it caused an immediate pretty intense flare. We tried again the next day and again I flared more intensely than I have in months. I’m not sure what to do as It’s coming into winter and it’s already freezing, I also have a 5 year old and 7 year old and I’m pregnant so I do need to be keeping warm.

Does anyone else react like this to heating and do you have any tips? It was this time last year that i started getting really poorly and im wondering if this was linked? I’ve dusted the radiators and got air filters, I’ve also got an electric blanket etc to try reduce how often we need the heating but we are going to need it on a little. I’m already taking the maximum amount of antihistamines as well as zaditen and low dose naltrexone. I’m so scared of my health declining again especially when baby is due in January

My mom died. Emotional stress is a huge trigger. Every time I try to greive I throw myself into a flare. I’ve tried freezing my emotions but it’s no longer working. I know I’m not the only one with MCAS who has lost a parent. How did you process and deal? Do I just say F it and let what happens happen or can I take something or more of something to help with the flare? I’m on a low histamine diet and take H1/H2 inhibitors, quecertin, and lots of other supplements. I also have Hashimoto’s. I live in Norway and my MCAS doctor works in a cancer hospital across the country so he’s not easily accessible even though he says call if I need anything. I don’t get a response for months and feel guilty because I don’t have a disease that can kill me in months like his other patients. My GP is clueless so I don’t ever ask her anything. How did y’all deal with the emotional stress?

My face is noticeably slimmer despite not losing any weight. I’m less red, my sinus pressure is nearly gone. I have way more energy!

I’m feeling really bad right now from a flare up and I keep trying new things that the allergist recommends, then I react to it and it leaves me even more flared (nasalcrom, rhincort, etc)
and after three rounds I am flared, scared, and deep in the “ will I ever feel good again?” Blues. Please just let me know this too will get better…

Is it hard to keep jobs with gastrointestinal reactions? My main reactions are severe stomach pains, diarrhea, and vomiting over perfume, food, or stress. I’m not sure how I’m supposed to manage a job with this. What does everyone else do?

I have only been able to eat pasta since July. I’m now 105 pounds.

Every time I’d eat something else it would make me feel like I was being choked out or it would give me a terrible sore throat. The change literally happened overnight.

I’ve been scared to try to reintroduce anything since bc I don’t want to ever go to the hospital again after they gave me a drug I was allergic to (Benadryl). That reaction left me bed bound for 5 months of horrific pain.

Help I’m desperate

Its been almost two years since I got mcas and till today everyday I get the why did I get this disease thought and flashbacks from my life before when I was happy and could eat anything use makeup, skincare workout ,didn't have to worry about getting mcas flares, could wat at restaurants with my family I some time think if I could get some time machine and go back to the life when I was all ok this feels like I'm stuck in a bad dream..I never ever thought my life would take such a toll. I was depressed before too but after getting mcas its next level. I don't do well with soaps, toothpastes even maintaining basic hygiene is incredibly hard. I miss being human. I see people living their life normally 80% of the world while I'm in the 17% trying so hard to keep going with all the depression and this disease. I need to hear some good remission stories so I could get some hope .I feel so alone in this journey. Plus the symptoms the throat globular feel it the air hunger wheezing makes you question if God forbid anaphylaxis could appear the constant worry. I feel like surviving each day not living.

As the title said, I had a serious episode today. I am very sad as I almost made it a month without an episode… just looking for some encouragement as I feel so down right now.

...Until it started to give me gastritis like pain/ gerd, with a bolus sensation. Anyone else with this reaction? It is not the typical histamine➡️bloating➡️reflux reaction, it is something different. Anyone else with similar effects,

Main symptom is insane heart rate all day 130+ and insomnia/crippling anxiety and tremors. I wanna focus on the allergy meds but I need relief right now. I literally cannot function. Doc wants me to do xolair but I’m literally bed bound and scared of side effects. Psych prescribed clorazapam for anxiety and propanolol for heart rate. Ketotifen just made me exhausted .. and Cromolyn weird reaction.

Hey, I tried multiple H1 blockers for MCAS now. Tamalis and Xados. They’re supposed to be no drowsy, but the day after I take them I feel like I was ran over by four trucks and stuffed in a washing machine. My joints hurt, I’m woozy, hazy, exhausted, POTS is worse, heart palpitations. Balance off and generally just have to lay in bed to shake it off.
Is that a common reactions to antihistamines with MCAS? Is it some compound that I react to? Or just antihistamines aren’t for me. Should I give a try to Montelucast?
I feel 1000% better with no meds tbh.

I have been taking cromolyn sodium and it seems to be doing a great job keeping my flares at bay. My biggest symptom (that bothers me) is my skin. I already have eczema and my MCAS aggravates it quite severely since it makes me so itchy, making the eczema get worse.

Now that I’m on medication I seem to not be reacting so severely to foods and my skin is improving but I can’t seem to get my histamine under control.

I have redness from my arms up from histamine overload full time and if I scratch it blanches white and will stay white for up to 15 minutes. I also have swollen joints in my hands and swollen eyelids by the end of every day.

What can I do to reduce the histamine load on my system?

For reference my IgE was tested in May and was 24,000+ and more recently 8000+. So I am making some improvements but in range is under 100 so I’m still extremely elevated

I have MCAS, ME/CFS, POTS, four autoimmune disorders, and had Lyme for at least 13 years (might still have it), plus more. I recently got a blood draw and had nine vials drawn. I felt so much better afterward. This has been a pattern for years. The more blood they take, the better I feel. I am anemic and have low blood pressure, so I shouldn't feel better afterward, but I do.

With ME/CFS you crash hard after all exertion. I was worried that going to the lab fasting and getting all that blood out would make me crash but I didn't. I skipped the crash that would have come if I had done something else. Both my physical and mental health were significantly improved, for about a week.

I know plasmapharesis is a therapeutic treatment for certain things like autoimmune disorders because it removed the antibodies in your blood. I'm trying to figure out why I would feel so much better. I was wondering about MCAS and histamine, or maybe I still have Lyme or another infection.

Have you ever experienced this? If so, do you have anything else besides MCAS?

😔😔

Hey guys, hope you all are as well as you can be right now.

Question. So, I’ve been dealing with mcas for a while now, but only in the last 6 months or so had figured out it was mcas. Since then, I’ve been taking the more radical rest approach, and doing things as I can in between flares. This has been good and healing in a lot of ways, but also may have backfired a bit.

I’ve now been discovering that I’ve lost so much strength in my body. Like, a ridiculous amount. Any minor task now feels like I’ve done a major workout, and the things I used to do with somewhat ease are becoming more difficult. My body feels so weak in the strength way, but I do experience more wellness feeling in other ways. I do feel like I need to step it up a bit, though, as to not decline into even more unfunctional territory.

Does anyone have any tips on how to regain strength without backsliding in other ways? Exertion has been a flare trigger of mine, which is why this feels like such a delicate line to tread.

Also, anyone have any motivational experiences of being able to regain strength well after a period like this?

Thanks so much in advance to all of you. I appreciate you all.

(Side note, I am on a lot of meds now that help this, so maybe I can push the exertion thing a hair more than I think? 🤷🏻‍♀️)

Edit: I did get some labs done about 2 months ago, and showed low ferritin, d3, b12, and copper. Have been supplementing them since then, but have heard it can take a while to correct those?

Is there powder you can tolerate? I am not super sensitive i can tolerate most food now, but when introducing new food, i have to be careful. I currently tolerate brown rice protein, since i added it i feel…stronger and better mood and my hair and nails improved, so i guess i was short of protein and i need a lot of it as i am on Tirpetrazide so looking for more alternative to rotate it. Any idea?

Hi,
Does anyone else lose eyebrows and eyelashes whenever their hair touch their face if they used the wrong product? And their face gets bumps and burning? Is this part of mcas or do I have a whole other issue? I get the feeling of doom too when this happens