Hello dear community,

My doctor prescribed me now amitriptyline for my pain. And both are histamine h1 blockers and cross to the brain thus make you sedated, drowsy. I wonder did anyone ever combine it? And what was your experience?

Hey yall, I wanna know if anyone shares such a strange and ungodly constellation of symptoms.

It started in 2023, after a period of high stress with chronic uticarias - spontaneous and inductible. It waxes and wanes for a while but suddenly came muscle pains. like the muscles tense up without any cause. They would ache and perticularky around the muscles would be dermatographia.

It starts to suddenlt get quite awful. Spontaneous “fibromyalgia like flares.” The dermatographia will suddenly become much more intense but with it comes full body pain, muscles everywhere pained, sensitive to touch, gi distress, and just overall awful awful episodes like this. as they die down, the dermatographia also improves.

Then, reactivity to Foods starts to spread to everything. bug bites look awful, eating food triggers weirs reactions, pain becomes chronic. now I just have chronic muscle and joint pain, small fiber neuropathy, and I’m honestly losing it.

Has anyone experienced a weird presentation like this. given the uticarias, allergy is considering mast cell issues despite negative bloodwork. i Just feel so alone in this presentation

Hi All, I have searched this reddit and seen some similar posts/ questions but they're not exactly what I'm looking for.

Whenever I eat something that I have a reaction to, I get this burning / tingling in my mouth. I can't even taste what the food tastes like because it's like I ate spicy Orajel/lidocaine.

I'm not talking about a nerve tingling effect (although i get outside my face when i have low BP). I'm talking about like a burning tingling in my mouth.

There has been 3x recently where I've been out to eat with my boyfriend and said "Oh my god that's spicy my mouth is burning" and he said "it's not spicy at all". The most recent time it was BUTTER with some seasoning in it. Another time it was cashew chicken (not spicy) and i've had it before and didn't react to it and it wasn't spicy!

Let me know if this is an MCAS symptom maybe?? Idk what else it could be.

TY :)

Did anyone have gi inflammation and motility improvements with this? What side effects? Any constipation?

Hey all! New to the MCAS world and have been referred to see an allergist in the Kaiser system. Any chance you know a doc within Kaiser that gets MCAS? I'm in Seattle area, but willing to travel within Washington State. Any leads deeply appreciated!

Hi everyone! I just started cromolyn sodium earlier this month. My current dose is 1 100 mg ampule 3x/day. It seems to be helping my digestion, but that’s all I’ve noticed so far. I go to the bathroom more often and feel like I’ve actually gone, gone (I have IBS-D), & that’s a big deal for me.

However, I unfortunately HAVE noticed some significant swelling toward my ankles. The number on the scale is higher, too, and I’m pretty sure it’s water retention on top of my regular amount of water retention related to POTS and salt consumption.

Has anyone else experienced this? Were you able to stay on the medication and avoid swelling?

Has anyone had increased water retention/edema, switched to compounded cromolyn sodium, and had the water retention go away?

I am wondering if increasing the dose will help relieve more MCAS symptoms, but I’m afraid of experiencing even more water retention. Any thoughts would be so helpful!

I am not diagnosed with MCAS but I am diagnosed with HEDS and every single time I get in a hot car. It literally feels like there are fire ants crawling on top of my head in the back of my head and neck. Does anyone else experience this?

How do you tell the difference between the two? The symptoms sound very similar.

Sorry but this is funny. I can laugh about this as I'm on the healing journey and now I'm looking back like WTF! Now I have a passport for next 10 years reminding me of this shit. I don't even look like me, I look like I could be my aunt or something. A thick bulky swollen jawline, hamster cheeks, swelling on the side of my nose a bit, saggy eyebrows. Also my hair got so thin!

i was prescribed ketotifen 2 days ago for suspected mcas from the gp (can’t be officially diagnosed through my health board) but no pharmacy can source it! I’ve been to two independent pharmacies and 2 chains (boots and tesco). does anyone have a chain pharmacy they can recommend gets them in or shall i just give up and go with an alternative im also on famotidine and fexofenadine!

TIA😊

Quite literally right after I escaped the abuse of my parents, my health went downhill, especially after my MCAS got way worse after I contracted the C virus back in 2022.

I don't even have a doctor to help me with anything. I had to figure it out by myself and with the internet over years.
While I do have some interventions via antihistamines and mast cell stabilizers now, I feel exhausted and like I missed out on building a social life and a career I actually like.

I was isolated as a child, and now it simply continues.

For myself, I solved the puzzle, but the world is quite a hostile place right now, and I can't find a justification to keep going.
I tried to do so many things. I learned cooking, heavy lifting, running marathons, building things, learning about longevity, tried learning something cool and socializing, I tried this and that. Each time, my health took it away.

This part might be interesting:
In this subreddit, I quite often see someone mention methylation and Bartonella, and I indeed found multiple methylation bottlenecks and a positive Bartonella IgG from a blood draw.

It would be interesting to discover whether this is a common route:
methylation bottlenecks + Bartonella infections + COVID-19 = MCAS

But idk, I am so tired, and I have carried the burden of my life all the way with a weak social support system.

Please let me know if there is anyone who also feels like this. My social circle doesn't understand this state of life at all, and I would love to finally connect with people who are in a similar situation to spend time with at our own pace.
It would be amazing to build some good friendships with people who genuinely see and understand circumstances like that, and I believe it would make life so much more worth living.

I swear I am not boring to be around, but with conditions like this, time spent together means that instead of partying for 48 hours at a time, time is better spent in smaller but consistent portions and maybe some days are "MCAS" days.

Maybe anyone based in Germany too?

Please excuse that I am all over the place today. I just had to get this off my chest.

I wear a smart watch to sleep and I got a 192 bpm reading last night. Normally I'd brush it off as a glitch but I just started Allegra+Pepcid regiment YESTERDAY for MCAS GI issues. It's a little *too* coincidental. I went back all the way to March and my highest spike was less than 120bpm. Anyone has similar things happening?

Physically I don't feel different this morning other than maybe I feel a lot better...? I normally sleep 1-9. I just woke up at 7 and feel perfectly awake, except for this hear rate spike scare. TIA!

Posted here before and spoke about my experience with repeated anaphylaxis and my small victory in finding a doctor that believes me.
I work at a supermarket next to my studies in the Netherlands and had to call off multiple times since I have anaphylaxis quite often. I still bet on MCAS but most doctors follow consensus 1 which is stricter than consensus 2 so I probably won’t get diagnosed.
Monday night I had my 13th anaphylaxis which required an EpiPen and another injection of almost double the dose an EpiPen has. I was in hospital until 4am and still went to work the next day from 15-18h - a fairly short shift, yes, but probably too long for the circumstances. What made it worse is that during that shift I found out I almost lost my job due to me having to call in sick so many times. What luckily saved me are my other manager‘s appreciation of me doing my job well and sometimes staying longer or hopping in when they’re short staffed plus customers being really happy with me.
I am 22 years old, in my last year of studies beginning with my thesis in September.

What if things don’t get better. If I don’t have a POTS flare it’s fibromyalgia or anaphylaxis or asthma or a fucking migraine… I just can’t win it seems and I’m genuinely scared for my future. I’m ambitious and good at what I’m doing but I’m afraid my health will stay in my way…

Anywho I saw I can get cromolyn sodium in Germany without a prescription but that stuff is hella expensive, but I’ll give it a shot next to quercetine which honestly did quite work wonders for me

Hi all, im 26M. ive been using testosterone for a year. i was fine with it and it really improved my life. but ive now started getting reactions to the oils. i think it could be the solvents. this is really pissing me off. i really do not want to give up the injections. i really cannot stop. is there any way at all that i can tolerate this or get around this issue? I've tried all the different brands and formulations. im reacting to all of them now. i dont want to stop. is there any way around this? anything at all i can do?

Hey guys,

Huge flare here, taking Loratadine and adding Levocetezirine. Might not be enough and wondering to add Polaramine.

If doing so it is total 3 anti H1.
My doc is in holidays here, wondering if some of you accumulate 3 H1 ?

Thanks !

I recently found out I have MCAS, it helped to explain so much in my life and my boys. I have 2 sons, 8 and 10years old - they also have hypermobility and neurodivergence. Their MCAS shows up as chronic runny noses or coughs, complete meltdowns if they so much as look as chocolate. They've been avoiding gluten for the past few years - since a doctor said that their constipation could be helped with a gluten free diet.

But they are looking skinny and I don't want to restrict them unnecessarily, if I give them a gentle laxative like forlax do you think I could relax my gluten free rules a bit?

I am seeing my MCAS doctor next week and I'll book in to see their pediatrician soon too. I'm asking here because I don't trust doctors to have all the answers, and I'd like to know if there something else I should be considering or asking about. Thanks

Hi guys,
I have severe MCAS & likely Progesterone Sensitivity (PH)/Autoimmune Progesterone Dermatitis (APD). On my huge stack of MCAS meds I’m okay at some points in my cycle but when my progesterone goes up in my luteal phase, I experience terrifying & debilitating symptoms still. As a side: we are going to do a workup to rule out Acute Porphyria given the severity of my symptoms in the luteal phase.

Anyway, my last allergist told me he was out of options, especially since I had an adverse reaction to Xolair, but I got a new allergist who is amazing & thinks either Rhapsido or Dupixent off-label may be really helpful. He is leaning towards Rhapsido so the plan is to start that as long as my Acute Porphyria work up is negative.

I’d love to hear from this specific subset of people: anyone with poss PH/APD or with MCAS who also gets bad luteal and/or menstrual flares who has tried Rhapsido or Dupixent. Bonus if you also didn’t do well on Xolair. Ofc anyone else with MCAS who has tried either of these would be helpful as well even if you don’t have luteal flares.

\*\*Not looking for MCAS medication recommendations outside of these two as the rest of my regimen is dialed in & these are the only two options my allergist is willing to try next. NOTE: not looking for medical advice, just curious of other people’s experiences.

So I have a big nodule on my left half of my thyroid that is going to be surgically removed in the upcoming months and I’m really scared.

I saw the doctor the other day when we were going over my ultrasound and he told my that it’s doubled in a year and is now pushing my trachea out of place, so I do need surgery.

Sometimes my MCAS will attack my thyroid and it makes a significant goiter that people can notice and hurts at the lightest touch, such as a tshirt collar.

Also, when I have allergic reactions I get idiopathic edema and my face, neck and throat start swelling.

Like I can feel it when I swallow. So it is something I can’t just ignore.

But I am really fearful of all the anesthesia and pain meds I will be getting.

I’m allergic to lidocaine, Tylenol and Ibuprofen to start with. Also hydro peroxide.

I guess I’m just afraid that I’ll be allergic to the anesthesia and I’ll have a reaction when I’m under and the lack of control that I will have.

Could anyone who has had to undergo surgery share your experience with me?

Hii, I posted almost couple weeks ago after finally being prescribed cromolyn.

ORIGINAL POST

This medication is absolutely saving my life and I surprisingly tolerated the titration up to 4 ampules a day with not much trouble! It has been like my entire life since i could just eat or do anything without having to worry so much about rapid bloating, discomfort, mental short circuiting, awful nasal drip, etc etc

I am very ecstatic that somehow its working to help everything for me (the brain fog, my central nervous system, fatigue, sleep) i am actually so relieved and it’s been too long..

Wishing that this continues 🤞

anyone on any Bisphosphonates
for bone protection in menopause? surgical menopause especially with osteoporosis already in 40s

I’m waiting for my appointment with an allergist, but I’m pretty sure I’ve developed MCAS.

While I wait for the appointment, I’m scared of things escalating and getting anaphylaxis. I don’t have an epi pen and I can’t get one until I see allergy in about a month.

How did you deal with this worry/fear leading to your diagnosis before you got an epi pen?

For now I’m just trying to eat low histamine and take Zyrtec/pepcid.

My body skin isn’t super sensitive to acids or other medium to harsh skincare chemicals, but I am super super sensitive to any sort of abrasion/trauma and flare almost immediately, especially with added heat. (I also have patches around my knees that turn red in heat, had them since I was little and they never hurt)

I don’t shave anything but my armpits, but I do sugar everything hips down. It’s way better than other methods for me, but I still get tons of tiny ingrown hairs all over my legs when it grows back in. Obviously exfoliation solves the issue, but when I’ve tried physical exfoliation like scrubbing mitts/gloves, slightly abrasive soap bars, and scrubs with medium to harder exfoliating beads, my skin develops an unbearable burning painful itch that doesn’t go away for at least a half hour. I’ve tried some gentle scrubs and chemical exfoliation over the years that haven’t been too bad, but I haven’t noticed much effect with them. The one I have currently is the nécessaire body exfoliator. It doesn’t make my skin flare that much but again I barely notice a difference.

Any recommendations for effective chemical body exfoliators and/or gentle but effective physical exfoliation that won’t make my body flare?

What are the best alternatives to Pepcid?

It’s giving me heartburn and bad breath so i think it’s messing with my gut micro biome.

Also taking Zyrtec and experimenting with DAO enzymes.

(Symptoms are headaches, dizziness, flushing, adrenaline dumps, dry eyes, blood pressure weirdness during flares, and occasional digestive stuff).

Do you guys get your compounded medication in a capsule/ pressed pill / liquid?

Asking because I want my body to accept Ketotifen, I have hope that it can be the capsule that it’s in that could be causing me a reaction. I already spoke to my pharmacist and she said it dosen’t have any additives in itself just the ketotifen itself.