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

I wish I could march up to their front door and tell them to use scentless products.

Literally, when I'm hiking in the woods and someone goes by, I can smell their detergent or dryer sheets on their clothes.

😔😔

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?

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.

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?

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? 🤷🏻‍♀️)

This is my third attempt in trying Ketotifen again in the last 3 weeks
First week I was taking 1 mg to 2.5 mgs just jumping up and down and then I hit a day where everything was depersonalized and my adrenaline was going up and down with this awful depression.
Took 3 days and went off it and restarted
I was doing fine on .25 mg bed time for 3 days and .50 bedtime the next 4 days then I added .25 in the morning for two days everything was going good until I added .25 in the evening. The next day I wanted to try .50 as my two weeks were coming up in the morning and omg I was hit with the most intense depression ever I was so mad because I was actually feeling better on .50 at bed time the antihistamine effects were wearing off that’s why I added so fast I thought I needed more coverage but I think I want too fast. Now I know you have to go slow if you sensitive like that. I didn’t take my dose last night or this morning you think it’s enough time to restart at night tn or should I wait 2-3 days and start at .25 again??,I hate that depression because I cant deal with it i just moved and got sole custody of my kids and I feel like the biggest failure because my kids aren’t happy where they live at with their mom and I have so much brain fog from mcas (got mcas again cause antibiotics) and the pain I have when I see them makes me sad and want to kms

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

Hello, I'm honestly just looking for any shared experiences or opinions on if I should go down this rabbit hole. (I'm broke, preparing for grad school, paying for a wedding rn. I need to be ready to make a case to my doctor when I go in because I can't afford a million appointments and always get brushed off. Lol)

My mother just tested positive for Hereditary Alpha Tryptasemia, meaning I have a 50/50 shot of also having it since it's autosomal dominant inheritance. I am 29, F. I have felt like crap for a long time.

Here are my symptoms for only the last few months:
-Pain in my right hand knuckles. It is disrupting my ability to work, exercise, etc. There is some very slight swelling.
-Terrible tailbone and hip pain. I can't even sit too long in a theater seat without feeling like I'm gonna expire.
-Horrible Fatigue. The kind where when it hits I can't even understand what people are saying to me because I can't think and feel like I'm behind aquarium glass.
-Gluten intolerance, frequent GI troubles.
-Frequent skin rashes my entire life.
-Higher than normal heartrate for my entire life. Nothing concerning to my doctor, but still noticeable. Resting is around 80 and it jumps to 100+ with very little activity.

Does this sound like worth a genetic test for you? Has anyone ever had similar symptoms with this condition? Is there something else I should bring up to my doctor?

Thanks for your time and kindness :)

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

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🤣

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?

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 and endometriosis, both recently diagnosed but probably with me since a long time and definitely worsened by Covid. I am on birth control for endometriosis and cromolyn sodium + montelukast for MCAS (about to start an H1 as well). These medications have certainly helped but I still deal with a lot of fatigue, vagal responses, brain fog...

It is impossible for me to know what's affecting me the most, endo or MCAS, and so I'm considering getting surgery as a way to try and know... I don't think I have a better option. It's a bit like flipping a coin, but I don't know which other options for improving I have right now...

I participate in the endometriosis subs, and I know surgery is a blessing for some women while not that helpful for others, but I am curios as to what the statistic among women with MCAS.

Thank you for your comments!

I'm trying to come off daily Benadryl and it is not going well, to say the least.

I'm working with my doc, however, I'd love to hear relevant success stories and strategies.

If you've done this and were able to maintain longterm without a massive rebound, how did you do it!!?

Right now the plan is to increase h1s and h2s, and add another mast cell stabilizer like PEA. Also considering DAO.

I was previously on lots of quercetin but realized that it was messing me up due to having slow COMT. We can't win!

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 😕

Hey folks,

Do y'all know of how and where to get your oral ketotifen and cromolyn sodium?

Also... thoughts on brain retraining? To help with symptoms?

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!

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?