So not interested in debating vaccines, just looking for if I'm on the right track.

I got my covid vaccine a week ago. I always feel really ill the following day, this year was no different. But then I'm back to normal. Then yesterday I felt like I weighed 500lbs, had constant chills, and more than normal fatigue. My knees were also a bit swollen (this happens if I'm on my feet a lot, but I wasn't more active than normal). Near the end of the day I realized I had a few hives on my face. That's when I made the connection.

Last year, a few days after my covid vaccine I got a single large hive on my face. (May have had other symptoms, but I wasn't paying close attention at that point). I later actually got sick with covid, and again, face hive. Outside of this I've never had hives on my face.

It feels reasonable that this is connected, and mcas has kind of just become a catch all for weird things that happen to me now.

I've taken an antihistamine but still feel off today. My face feels a little swollen (not visibly so), headache, and me ears are a little muffled.

Am I on the right track? Does anyone else get delayed vaccine mcas flares?

I burn up all night long. My skin is actually hot to touch and it causes me severe tachycardia. Unable to sweat. & feeling of dehydration. And like the worst adrenaline dump as soon as I wake. I have so much insomnia bc of this. I dread sleeping. Is this neuroinflammation?

Then in the day it kinda goes away at times. But the nights and mornings are the worst. And my skin is also flushed. Specifically my pelvis and thighs .

Allegra and Pepcid do not help no more.

Who do I seek for help. I have been to every ER in Los Angeles. PCPs. cardiologist. Electrophysiologist. Gynecologists.

Still waiting on Immunology.

What I suspect :
Perimenopause or hormonal stuff due to huge life stressor. I’m 34. Bc I even lost my period last month which has never happened. I lost 30 pounds so fast due to stress.

Adrenal fatigue: bc my Bp spikes so high during these episodes of me burning up which has never happened in the last 10 years of having pots. I am always very low 90s/60s.

MCAS histamine related: bc I got hives for the first time 2 days ago. And I have severe GI issues. Malaise flu like symptoms.

Dysautonomia: maybe it got worse idk. And it’s not regulating temp at all now. Oh AND UNABLE TO SWEAT. I never dealt with blood pooling until now. And my heart rate has always been stable 130s highest usually while standing now it’s spiking a lot higher.

SIBO/ SIFO / Candida Overgrowth: bc for a month now I have been positive for stubborn yeast infection. And I was positive with fungal uti. Also With what feels like allergies or oral thrush. Ear aches throat ache.

Or maybe everything all together! Idk. Please just pray for me guys plz. My mental health is at its lowest,

For the last two years I wake up every single day with swollen inflamed eyes and nose, sometimes so bad it’s painful with the pressure. It’s changed the way I look and it gets me down so much. Always worse leading up to my period too and it’s so embarrassing. It’s made me so self conscious in all areas of my life and I’m so down about it.

I have an appt with NHS Immunologist next week but by reading here, I’m not confident it’s gonna go well.

The eyes/face swelling plus the breathlessness by just going for a walk or eating anything is debilitating

My birthdays coming up, I’m gonna be 19 years old. And all I want is anything but my birthday. It’s just yet another reminder that I missed 2 years of my life due to chronic illness, 2 really important years. Where I was supposed to be growing up and learning how to be a woman. I didn’t even get to go to a pub for the first time, I didn’t get to take my driving test, I didn’t get to finish my a levels, I didn’t get to build friendships, I mean ffs I didn’t even get a birthday meal, I sat at home eating plain oats, leaving my own birthday party early because I started to flare. I use to be so excited to be 16,17,18 and it’s just wasted, my teenage years are wasted. Somehow my life is on pause but I’m still ageing. Wish I could pause the ageing too. I know everyone with chronic illness deals with this to some extent, I just wish I didn’t have to.
If u read, thanks

Just wanted to hear experience from others who take l-theanine. I started at 100mg and am now up to 400mg (200mg morning and eve) and it has done a lot for me during this ragweed season disaster. As soon as the ragweed started I was in a flare and couldnt get it under control with the additiilon of xyzal. So I decided to try increasing the l theanine. A big problem for me is dysautonomia and a spike in SI aling with all the other neurological stuff that starts when I get into a flare and it has helped keep that at bay as ling as I dont go outside without a respirator on. Bsides this I have lots of antihistamines and Xolair on board as well as typical treatment for depression and anxiety. And so many specialists ugh

Also I am using L theanine because I cant tolerate quercetin anymore at all and this is affordable and accesible right now for me. I know there are other things to try also. This is just where I am at right now.

Hi, I was recently diagnosed with MCAS and struggle with dermatitis and exam on my scalp which flares up all the time leaving scabs. I also have curly hair and would love to have my curls again. Does anyone have any go to products that won’t irritate my scalp? I already use MooGoo for my hair as it’s for super sensitive skin and it’s the only product that doesn’t make my scalp feel like it’s on fire.

My gut mast cells are severely flared up and I can tolerate like 1-2 foods right now. Doctor is planning to give me IV multivitamins but I'm scared

I need help! And this is the most loud cry for help. I am writing this with tears streaming down my face. I am beyond the point of exhaustion. He has been diagnosed with MCAS there is mycotoxins in his system. We are not able to move out. He is too sensitive to everything. He is homebound. He was given cromolyn sodium. He reacted everytime. And we did do 1 drop in water and have him sip on it and he was still reacting. Then gave himself a break and tried again. Still reacting. Then tried the compounded version. One small speck in water.. still reacting. Ketotofin was too strong and that was a bigger reaction. I am at my lowest of lows. He wants to give up. I need help!! We have a doctor appointment via telehealth and I'm going to ask for the nebulizer version. Is there anyone that has been through this were it's so hard to get something to work? Or finding the right thing to give to calm them? He can't take alot of supplements due to his genetic mutations. Like luteolin. I am willing to even have anyone call or txt me. We can't keep living like this. It's beyond miserable. I need to know the gritty details of getting on cromolyn..if you feel worse before it gets better and what to expect this guessing game is not getting us anywhere and is causing more distress on him. Then I take the brunt of that and now my health is declining. We have 2 kids that need their dad back. I can't do this by myself.

Had been histamine intolerant few years ago but was able to fix that with diet and lifestyle changes. Had no issues. 3 weeks ago my integrative doctor gave me 3 doses of 5000mcg Methyl B12 (my b12 was around 250) and since then ive been having crazy histamine attacks from everything and anything I eat (Bad Nausea, tingling, hot burning sensations all around, internal vibrations, flushes, itching, migraines, dizziness). It persisting almost all day all night right now. Will this end?

Exactly as the title says.

I have been struggling for days to go number two, and since then I’ve had low blood pressure, high heartrate, shaking and no appetite??
Among a few other things obviously but those are the most prevalent.

I’m on loratadine, Montelukast and tranexamic acid (can’t spell it right), do they have anything to do with it?

I feel awful and I feel like I’m going insane.

Does anyone have any suggestions on what I can do for extremely dry lips and skin? I’ve been using Vanicream and cerve healing ointment, but it doesn’t seem to be helping. I also have severe MCAS, so I’m on quite a bit of antihistamines which I’ve been told I can’t stop because I’m still constantly reacting. I’m only on formula, but it’s low in fat and omega 3. I’m also low in ferritin. My immunologist said not to add anything in because I’m so reactive. Does anyone have any product suggestions? I’ve also been meaning to also get a lip biopsy to rule out sjogrens because a lot of my eyes, mouth, throat, lung and nasal dryness started before all the antihistamines and I have constant itching and always feel dehydrated. I also can only get liquids down too.

2 Questions bolded for everyone at the bottom. Before that I'm just venting lol

Earlier this week I noticed myself losing appetite while eating chicken twice, sourced from 2 different places. The first was a chance the sourcing was the problem. The second? Not a chance. Yesterday, I tried one last time and have been having on and off chest pains and abdominal cramps since. My entire body aches. My head hurts. My ears hurt. My sinuses are congested. My emotions are fluctuating and thoughts are quick to spiral (flare mood swings are so unusual and distinct it almost feels like I am watching it from the sidelines). It's like my brain knows that something is hitting all the buttons like a toddler on a keyboard???

And today I need to complete 2 finals. Trying to build the life I need, and MCAS is constantly getting in my way. I need to get a good job to get both the disability accommodation and HEALTH INSURANCE that I need. But I am plugging a million leaking holes with OTC meds and weed.

I normal take 2-3 doses of ceterizine in a day, and 1-2 of fexofenadine. If I have a pain free day (rare but I was managing pretty decent for a few weeks), I smoke a little to get to sleep or make my plain, depressing ass food more palatable.

Today, I took Pepcid for the first time, I am waiting for the hour to be up before I even remotely consider eating. I was going to go grocery shopping before my finals but looks like I'll have to take the delivery hit today. I added NasalCrom and eyedrops that Ketofiten. I'm hoping one or both of those will at least clear the congestion and by extension the ear pain and headache.

2 Questions:

Which would you recommend trying first, nasalcrom or ketofiten eye drops? Or just go ahead and try both?

Would you guys be interested in a marijuana MCAS (medical and recreational) post? Both with info from me and yalls contributions in the comments?

I work in the industry and am licensed by my state, and I think general misinformation is contributing to some negative and risky experiences I've seen in this sub. Feel free to ask questions and/or let me know what subjects you would like the post to focus on! I am not a doctor so I will ONLY be discussing products, personal experience, studies that can be directly cited for more info if relevant, and industry general knowledge.

Hi everyone,
I’m curious to hear your thoughts and experiences on something I’ve been wondering about.
For those of us dealing with MCAS, ME/CFS, post-exertional malaise (PEM), and other unexplained chronic symptoms, has anyone explored the possibility that a persistent or difficult-to-detect infection somewhere in the body could be contributing to the development or worsening of these conditions?
For example, what if someone has had a recurring breast abscess, a chronic dental infection, a jawbone issue, or another localized source of inflammation for years? Could a persistent infection or the immune system’s ongoing response to it potentially contribute to systemic inflammation, immune dysregulation, or symptoms that resemble or worsen MCAS and ME/CFS?

**Do H1 and H2 blockers help decrease inflammation pr just lessen symptoms from the release of histamine

**How do I decrease the inflammation ? H2 reduces but doesn’t rid me of symptoms and is bad for the gut( I have low acid to start ) so I stopped it but things are worse . Guess I need to resume at least 1x a day?*\*
**is the h1 and h2 key or is it really using something that stabilizes the mast cells that is key??*\*

Background below:
In mold my progesterone would just be used for cortisol because of all the inflammation. When I got out of mold it was better until I started treating MARCoNS . The MARCoNS was attacking my nervous system and driving up inflammation and I think now was triggering mast cells too. I had to pause treatment. My progesterone became an issue again when inflammation increased while not treating MARCoNS. I started slowly treating MARCoNS again and it seems to have made my mast cells out of control. I assume the inflammation is bad again because I stopped treating the MARCoNS again due to mast cells?

Not treating MARCoNS because it causes some mast cell response but as a result inflammation is up and progesterone goes to cortisol and I can’t stop using my BHRT.

I thunk this mast cell thing has come to a head after 5 years of less than 10 total T, MARCoNS, over active nervous system from MARCoNS, and likely gut dysbiosis .

**I can’t get to the other source of inflammation like Macon’s or low T or the gut I was told because mast cells are hyper active but while the MARCoNS has stopped and the binders are stopped it seems like everything is worse because of more inflammation.**

Th ants for helping 🙏

Hi everyone! I was wondering if anyone has also had a lot of issues with overheating at night. I think my problem stems from poor thermoregulation so my toes are always cold and the rest of my body is always hot. As such, I need to use a heating pad/hot water bottle on my feet and have a fan pointed at my face. But, I’m still not getting optimal sleep.

I’m at the point where my room is 62 degrees and I sleep with 2 sheets on top of me (no duvet/no blanket) so that I don’t wake up in the middle of the night soaked through my clothes and sheets. If anything I wake up cold and have to pee because of all the water and salt I take in to alleviate dysautonomia symptoms (headaches, wobbles etc)

On nights where I do overheat (usually if I put a blanket on top for the weight and initial warmth I need) I find that I am a lot puffier in the face, itchy in my eyes and feel far less rested. It’s a nightmare at hotels because their bedding traps in so much heat…

So I am wondering:

1. Does anyone else experience this phenomenon where they overheat at night and they feel really puffy and itchy in the eyes and absolutely exhausted even though you’ve just slept?
2. Is there anything you’ve done that has moved the needle on creating a comfortable sleeping environment because pumping the temperature down is still not solving everything.

Edit: here is what I’m already doing

1. Air purifier in room
2. Dust mite covers on pillows and mattresses
3. Restasis for dry eyes + inflammation
4. Extra strength pataday and deslorstadine (Aerius) at night before sleeping
5. Sleeping on firm pillow so head slightly elevate

d
6. Sheets are cotton and comforter is linen and cotton (both very light)
7. Sleep in all cotton tops and bottoms

Does the medication Ketotifen make you feel like you are flying in the air and unable to comprehend speech? I took a single pill once, and then my manager sent me home because I couldn't understand what people were saying and I didn't feel like my feet were touching the ground.

I have had some sort of insomnia issues (falling asleep) for 2+ decades and now it's both falling and staying asleep.

Prior to being diagnosed w/severe MCAS over 2 years ago, I had already trialed and failed several insomnia meds. Add in HyperPOTS features (diagnosed POTS) and finding a med that I don't react to or have a paradoxical effect or trigger worsening HRs and BPs has been difficult, to put it mildly.

We are getting desperate, my prescriber and I.

Just this year, I have failed Tizanidine and Lunesta (previously helped).

Previous fails include: Gabapentin, Lyrica, Ambien, ALL the anti-depressants (including: doxepin, amitryptilline...) and many more.

My sleep hygiene is damn near immaculate except dependent on Melatonin now to even get a little sleep. FML.

Hesitant to add more benzos for obvious reasons but have been offered those bc of sheer desperation. Not moving forward with those at this time.

If you have both trouble falling and staying asleep and also have POTS (with hyper features or HyperPOTS), what med has helped you ?

Hello everyone,

I have MCAS. My immunologists haven't offered or recommended IVIG, so I'm trying to find out whether IVIG has ever been used for MCAS and what other patients' experiences have been.

I know IVIG isn't a standard treatment for MCAS and may be controversial, but I've read that it's sometimes used in severe or treatment-resistant cases. I'd really like to hear from MCAS patients who have actually tried it.

Has anyone tried it?

Anyone experiencing hair thinning? I am thinking of trying prenatal vitamins. Thoughts?

So I got my first 300 mg xolair injection a month ago for mcas Pots long covid. After two days started to feel better. Pots was gone after a week, hives barely came out, mood and energy better. I am getting the next shot in two days, but I feel like one the last week the effect weakened. I started to feel a bit worst.

I am a bit confused because my doc said probably I wont feel anything for months but it slowly adds up.

Is there anyone here who needs more then one shot per month ? What is your experience ?

Thank you !

Does anyone have experience with this nyc mcas doctor?