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 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!

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.

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 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.

Thank you in advance!

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?

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.

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!

Hello lovely people. I hope you're all feeling as stable as possible, my love goes out to all of you and I hope you are all continuing to manage as best you can with this dreadful condition ❤️

I have a question - has anyone else experienced a kind of thirst that can't be satiated by any amount of water or electrolytes? My doctor has no idea and wasn't concerned about it when I brought it up months ago - I am wondering if anyone has experienced the same. I'm trying to reintroduce white rice and this seems to be the worst offender... whenever I have it, it makes my insides feel totally dried out inside for days afterwards, and during this time drinks do absolutely nothing - I'm stuck in a permanent state of feeling like I haven't had anything to drink for days. For months now I've been taking 1000mg sodium 210mg potassium 70mg magnesium sachets in water daily to try to mitigate this feeling but even having just a little bit of rice (not even a teaspoon's worth) will totally nullify it and the dreaded thirst will return.

I've tried looking this up online but haven't found anything, has anyone been able to figure out what it means? It's been happening on a lesser scale whenever I eat pumpkin (which has been a safe food of mine for 3 years), but rice is another beast. I've had an extremely limited diet for 3 years (only 4-5 foods) and I've been having rice on and off for 9 months now, so surely my body would somewhat be used to it by now? I'm very thankful for any insight ❤️

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'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.

Since COVID in 2020, I have been suffering from severe chronic constipation with restlessness and sleeping problems. After antibiotics in 2022 and a bunch of probiotics I also developed severe food reactions with worsening restlessness, insomnia, shortness of breath, hives and rashes.

Has anyone with MCAS improved severe constipation through mast cell stabilizing treatment like Xolair or other MCAS medications? Ketotifen and Cromolyn worsen the constipation for me :(

My situation is currently very serious: constipation has contributed to SIBO and severe weight loss. due to severe MCAS I cannot tolerate laxatives, magnesium or any other medications and currently rely only on enemas.

I would really appreciate hearing about anyone’s experience, thank you.

I am starting to suspect that my varied issues might be down to some degree of MCAS. I have had severe chronic migraine since my teens and the only preventative that ever worked for me was Pizotifen a pretty strong antihistamine which caused me to sleep 18 hours a day. Tried a lot of things for migraine and currently on Botox but it isn't working. I just successfully used promethazine to get a nights sleep without waking up hours too early or having a migraine in the middle of the night something that often to me. Unfortunately promethazine like Pizotifen isn't a long term solution.

I have a history of significant allergies to pollen (this seems to be less severe now but may still be an issue more systemically), cats, some foods (peanut skins causes me severe pain) and also some dermatological manifestations like itchy bumps coming up on my skin for no apparent reason and eczema. More recently I have developed quite severe bloating after eating even a small amount of food sometimes which almost makes it hard to breath and can make me want to cough. I have been trying to manage this with digestive enzymes which help a bit. I have a diagnosis of IBS which seems to flare up at times.

I also have a big issue with sleep maintenance insomnia which I have been treating which is especially bad in the spring and summer. I have been trying to treat it with things that stabilise blood sugar, lower cortisol or increase gaba both supplements and practices but it hasn't been working which leaves me with histamine as a potential reason?

The hot weather seems to make everything worse and my symptoms are much improved in the cooler weather. Right now my lack of sleep especially makes life pretty unbearable.

I am looking for advice to how I can test this theory? I have taken a loratadine tablet this afternoon and I have some liposomal vitamin c I could use and I have some dried nettles I could make a tea from. Would taking these and then recording if symptoms are better or worse be a useful way to probe if mast cell activation or histamine is an issue for me? I am in the UK with not recourse to private treatment and the NHS is not that helpful usually with things like this that don't fall neatly into it's treatment pathways.

I can eat cooked potatoes/ cooked carrot/ cooked zucchini/ sea fish/ herbal teas with no issues at all. Is there anything else I can add to my diet?

I do understand everyone is different but maybe there are suggestions? Maybe you have the same safe foods plus something else?

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?

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?

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?

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

Cromolyn package says to keep it 68-77 F (20-25 C). Anyone know what the actual upper limit and time limit on that might functionally be?

I am disabled and have been very unwell (mostly in bed since the beginning of June) so I have been keeping the medication by my bedside otherwise I won't be able to take it. I am cognitively impaired too so I've only just realized the temperature issue. My house has definitely exceeded 77 degree. Probably at least 85 or maybe even up to 90.

Package says not to take if it's cloudy or contains precipitate. That is an obvious sign that I am not seeing.

Should I be worried I compromised the medication? 😬

Do you have a short video (maybe 2-10min) that you find useful to share with friends and family who have no idea what this is? Something that is easy to understand but still accurate.

I'd be interested in recommendations for longer ones, too, if you have seen many and really recommend it as the best one...but I'm seeking a low barrier for time and understanding.

Thanks!

Well I think I found a new trigger…Anyone else get a flare from visiting high altitude? Did it go away as soon as you descended or stick around for a while? I’m not sure if I should try to get past it and try to acclimate or just drive back down this mountain.
This condition has turned me into such a hypochondriac. Anything out of my normal routine makes me flare and it makes me never want to go anywhere!

Basically the doctor said they couldn't do anything for me and explained that since my reactions are all internal(adrenaline dumps, fast heart rate, insomnia, bloating, gas, headaches, aching pain in arms & legs), and NOT external(rashes for example), that I have intolerances and not allergies. I did get a blood test done and it showed that I have a low level allergy to wheat(I'm also experiencing mild symptoms from various foods I've never had issues with before, but only wheat showed up on my test results). This doctor also told me that mold exposure doesn't trigger MCAS, which confused me since I've read quite a few articles that mention mold exposure as a possible trigger for MCAS. And right before I started getting explosive symptoms, I was exposed to mold. She pretty much told me to go see a gastroenterologist, which I currently have an appointment scheduled for.

So me being not the expert here, I didn't really question this doctor on the spot, but I'm a bit skeptical on if she was giving me correct info. Anyone have any advice?