TLDR: Ostracized from girls nights due to perfume. Forced to leave hotel on a vacation due to said perfumes.

One of the biggest challenges for me with having my life is the isolation.

Warning:
Long venting post ahead.

This last weekend, I was supposed to go on a girls trip, staying the night in a hotel a few hours away from home.
I spent the night prior prepping food so I could eat the night I’d be away from home, and due to my sensitivities to scents, everyone agreed to not wear perfumes or other scents on the trip, a request made by the person who planned the event.

I spent hours driving to the destination, and the person I was supposed to share a bed with was absolutely coated in perfume.
Being in the room for 10 minutes made me react, leaving me no choice but to leave and drive back home. I spent 8 hours straight driving, and was absolutely exhausted.

If I was unable to climb stairs, and was asked to drive so many hours to a hotel without an accessible entrance, would they feel bad then? Would they try to ensure I could attend? Or would they force me to return home, with a quick “sorry” before going along with the fun activities of the night?

I saw a crafting meetup event on IG in my region, which I’d love to attend, but it was held at a pizza restaurant, and being that nightshades are my biggest trigger, I couldn’t even dream of stepping foot in a restaurant like that.

I can’t go get drinks for happy hour with my coworkers or friends.
When my office mates at work don’t wash their perfume off from the night before well enough, I have no choice but to find some random location in the building to work or risk a flare up from sitting at my own desk. (I’ve talked to management but the enforcement is non existent by HR)

It’s bad enough I can’t go out to restaurants, or eat anything beyond the five foods I’m stuck eating day in and day out.

I still try to remain positive in life, find the best in people, enjoy those couple foods I can eat, but the reality of me being an “other” in nearly every aspect of life is absolutely crushing and truly devastating, especially when it’s clear others simply don’t care since it doesn’t impact them.
Thank you to those that have made it this far in my venting rant; I feel like those in this subreddit would understand me better than most,

So… last night I dared to try Montelukast after almost a week of looking at the pills. I decided to use a smaller dose to at least see if my body could handle the ingredients in the pill because that is one of my biggest concerns. I don’t take any pills other than Allegra, Vit D (because I’m super deficient), Iron because my hemoglobin is screaming, and quercetin (all with 2-3 bare ingredients).

At least I was ok last night, but I know the micro-dose is not showing the full effects. I will try this dose for a few days and move up little by little until I reach my full dose if my body can take it.

My breathing problems have exacerbated in the last few months, and it’s scary, so I feel like I have to risk it and pray that I don’t get any of the serious side effects. 🙏🏽

Just sharing because you guys understand this. 🙂

I’m finding it frustrating figuring out ways to build up my “good” gut bacteria after antibiotics when literally everything online says to eat things like kimchi and fermented things that I can’t eat because of MCAS :/

Not that it matters, but this is my first ever Reddit post.

I have always experienced that crawly feeling your skin gets when you have the flu, but I always thought it was random. And it never was accompanied by fever, so a complete mystery.

Nowwww I'm wondering if all those times were during histamine flares/MCAS triggers. (I only found out I have MCAS like six months ago.)

So I thought I'd post here and see if this is a symptom others have experienced?

I want to preface that I am a firm believer that in most cases (especially in us MCAS folk), a lot of med effects are not necessarily a direct effect of the medication but rather how your unique biology interacts with it. So please know I am not saying Xolair *caused* all of the following, but it has clearly in my case contributed as my immune system shifts.

Since starting Xolair a few months ago, my appearance has drastically changed for the worst. As someone with previously clear, dry skin and thick hair — I have developed tiny pimples all over my face. My face and scalp are severely oily. My hair used to go days between washes, now I need to wash daily to avoid grease building up. My hair is also naturally curly and it has been extremely thin, flat, and frizzy.

This really has taken a toll on my self-esteem. Honestly, if the tradeoff were that I had less symptoms, it could turn me into a frog for all I care and I’d just live with it. But the fact that I’m dealing with bad side effects and now this too, I think it’s just not the treatment for me.

I wanted to share in case anyone else can relate — no you’re not crazy!

Thank you in advance!

Hi all - after years of terrible dermatographia and a very low threshold for physical stress that caused flare ups, I finally tried Ketotifen.

Took my first 0.5mg dose last night before bed, and was prepared for some drowsiness today, but I can barely function. Brain fog is INTENSE and I feel a bit nauseous too.

Also the pharmacy gave me a 3 month supply right off the bat for $225, and I’m worried I’m gonna be stuck with this large amount and be struggling on it.

I hate the idea of depending on a medication with severe side effects, but wondering how normal it is to be so out of it after just one dose. It worries me that I’m taking something that can impact my brain so hard.

Any input/ experiences/ tips would be greatly appreciated!

For context, cooking, hosting friends for dinner, and trying new restaurants used to be some of my favorite hobbies. I have been dealing with MCAS now for quite a few years and have only been able to eat max 5 foods for 3.5 years now. I am still obsessed with food, follow food-related content on social media, watch food travel shows, look at my cookbooks longingly... It sucks so much having a passion you are unable to engage with properly.

I do not know if this is healthy or if I should just cut all of this out of my life. It was such a part of my identity.

Anyone else experience this?

I mean I just have to eat and drink like crazy. Sounds crazy but I just wondered if anyone else has that. I'm not sure it helps by eating and drinking but it's like an insatiable need. Especially for sweet foods.

Hi guys. Just wanted some reassurance that this isn’t just me experiencing this. I’m not diagnosed with MCAS but I do have hEDS and POTS, and I am diagnosed with Oral Allergy Syndrome, so we’re pretty sure MCAS is likely I just don’t know how to go about getting a diagnosis. I’ve recently developed allergies to most nuts, with peanuts being the most severe. I LOVE peanuts and peanut butter, and giving them up has been HARD. However, it was very scary when I was all alone and had to call 911 to my dorm because my throat was getting numb and tight. We did allergy testing and it’s not a “true” allergy, but my allergist said still avoid it and if it causes any throat symptoms then use my epi pen. I keep having people, mostly my sisters and cousins, saying “you’ll be fine” and “you don’t have a peanut allergy” in regards to me saying I can’t eat something with peanuts. I feel this implies they want me to eat it and prove that it actually is severe and will send me to the hospital. It’s also not unusual to develop new allergies as you get older. I don’t know why they don’t believe me. I don’t know if they think I’m faking it. I would not fake this. I love peanut butter way too much to randomly decide one day that I wanted to fake an allergy.

Sorry if this has been answered before but I'm too fogged to read through the post history.

So, has anyone had any success to food reactions which appear as you eat and/or minutes after finishing a meal? I'm really curious in someone who can confirm quercetin alone had this effect, so someone who didn't simultaneously take other stabilizers like ketotifen or chromolyn, famotidine. Thanks.

I tried my first dose on Friday before dinner dumped the whole ampule into a glass of water, drank about 3/4 felt really weird and then woke up with flushing on my chest.

I knew that many folks had to titrate on but I thought I was by only taking one dose a day and adding another dose each week slowly was titrating. I really didn't expect to have such a reaction. But also I'm a slow learner 🤣

I did 10 drops today before dinner. About to do another 10 before bed and then do that again 4x tomorrow. I mean this is 10 drops is equivalent to .5mg and there 5ml in an ampule. So basically 1/10 the dose

If I don't react what is the amount of time I should wait to increase? I'm on h1 and h2 2x a day and hydroxyzine at night. Like a couple of days? I just am not sure and it seems like it's going to take a while to get anywhere near an effective dose.

Thanks in advance

i started taking it almost a month ago now, stared with a lower dose and worked my way up to 1mg twice a day. my symptoms don’t really feel any different and i’m not noticing any side effects at all? i still get my small normal reactions sometimes to my safe foods. is this normal? i’ve been reluctant to try new foods because of this (im very severe, down to 5 foods). has anyone else had this experience?

I've been very sensitive to medications for years, and I've constantly heard from doctors that 'this medication shouldn't cause insomnia.' I kept being told to just push through, but instead of improving it almost always got worse. I'd have a hard time falling asleep, would be itchy and physically uncomfortable, and have restless sleep often with nightmares. I can push through most other side effects until they improve, but I can't function without sleep for days on end.

I always thought I just was unlucky with medications, but I've been wondering recently if its actually an MCAS reaction rather than a medication-specific side effect. Most recently I've been struggling to find an inhaler for my asthma that doesn't keep me up all night, but pretty much everyone I've seen about it acts like I'm the first person to ever mention insomnia to that degree. Is this something others have experienced? I would like to feel a little less crazy about having unique side effects. Also if you have experienced this, has MCAS treatment improved things? There's medication that I could really benefit from taking for other conditions but I can't currently tolerate.

I’m two months into 2mg daily, and I don’t feel like I’m getting sedated anymore but the drowsiness it’s causing is intense and it comes in waves. When I take the first dose I feel fine but once I take the second I tend to go down for a 10 full hours. I can’t tolerate taking 2mg together yet it’s too much

Symptom-wise it’s amazing though, my joint inflammation is completely gone along with a lot of my pots symptoms (I have no idea how), I was even able to drink a glass of wine a few nights ago with no flaring. But the drowsiness is a real problem. Did anyone else still have it after several months? Did anything help? Titrating up or down etc?

I've recently developed intolerances to many foods and water I've tried to get in with my family doctor and my specialist but with no luck any advice I don't want to just go to the ER as I'm not actively swelling or flaring. But I'm not sure what to do at this point

Has anyone in here struggled with treating Rosacea? I started getting rosacea on my face with small pustules on my face that look like pimples but aren’t. My derm prescribed a cream with ivermectin, metronidazole USP, and niacinamide USP (inactives are BHT, glycerin, Krisgell 1000 (?), potassium azeloyl diglycinate, and suspendisse silicone gel) that almost seems to be making it worse instead of better. Beginning to wonder if this is a MCAS thing?

Any of yall have reactions that last this long?
So yesterdayyyy around five I accidentally drank some juice with a fruit I react to (I know I need to start reading ingredients every time😭)

Only took a few sips but like a little while after my throat was super aggravated, bad sinuse drainage starting up. And literally SINCE yesterday then I’ve felt like crapppp, my sinuses are so aggravated and I feel fatigued

Idk if I just coincidentally was getting sick at the same time or if it’s just a longgg lasting reaction 😔

So I’m curioussss on if others have had stuff like this happen

1st dose on Monday. I have zero appetite. I skipped breakfast, ate 1 cup of baked oatmeal I'd prepped for lunch and only picked a few veggies for dinner that I forced myself to eat. Maybe at most a cup. That was more than the first day.

Is this a normal side effect? Day 3 and any other symptom resolved already.

1st dose 75 mg.

I am not diagnosed yet, but suspect I may have it. Was this something that developed over time or did you just have MCAS one day but didn't the day before?

if you had a bad mental health reaction to singulair how quick was the onset? i’m taking my first dose today and want to know what to look out for

pretty much what the title says. i started montelukast at 5mg for three weeks and have been taking 10mg for a week. it has helped me so much, but the only problem is that it gives me really intense/vivid dreams and nightmares. i take it in the morning/early afternoon but that doesn’t seem to help

is it likely that this side effect will fade away? should i switch to a different leukotriene inhibitor, would that help with the side effect?

Hi! I have long suspected I have MCAS, and am curious if anyone’s symptoms were mostly G.I. related.

I have struggled w diarrhea for 5-10 years, all the time, after eating, during eating, even when I eat “safe foods”. It’s progressively gotten worse, especially when coupled with the constant anxiety about shi**ng my pants in public lol. It’s painful, urgent, and unpredictable. I also have 6 recently diagnosed IgE food allergies, all mild, but they do cause allergic reactions. I also have diagnosed seasonal allergies (mold, dust, trees, grass). Ive also had new allergies pop-up recently, specifically to cats which I’ve had my whole life.

I’m always itchy (palms, scalp, neck), a little uncomfortable, lightheaded, with a tummy ache essentially. But I don’t struggle with flushing, pain (beyond stomach pain), migraines, and the anaphylactic reactions (unless I’ve eaten a lot of one of my allergens.)

I know MCAS looks different on everyone, but I’m curious if anyone’s symptoms sounded like mine? My allergies are manageable, even tolerable, with antihistamines, it’s just the G.I. issues that are really horrible and ruining my life.

**I am pursuing getting a diagnosis, but I’m moving + starting a new job and need to figure out insurance, doctors, etc. and I’m sort of just desperate for a little bit of help in the meantime.**