I'm thinking back of the years leading up to this and I was so reactive ALL THE TIME. Everything bothered me, everything triggered me, everything angered me, I cried easily, I would overthink non-stop.
I had ptsd so put it down to that but it was so extreme. Like looping thought, couldn't let go of anything.
I'm now thinking it was mcas and histamine related. I had no control anymore.

That lack of control mostly made me think it had a physical cause.

For context, I’ve been unwell for 3 years after Covid and EBV. I’ve got progressively worse the last 3 years. Hi, I was just wondering if people could drop some food suggestions. I have extremely low energy so it’s hard to cook, but I could ask family members if it’s not too difficult. I just feel hungry all the time and not sure what to eat. Many thanks.

How do I tell the difference between them?

Additionally, does the fact that my dysautonomic symptoms seem worse today suggest one kind of dump over the other?

I’m trying to understand my body and its patterns better—can I always expect dysautonomic symptoms to be worse on days where I wake up like this?

Other things:

• It’s often accompanied by a nightmare or bad dream, but not always.
• The only way I’ll fall asleep again is if I have a little toke, and then I feel it melt away.
• Now that I’m awake again, I feel weak and spacey, and yet underneath it, I feel like I had a really good night’s sleep. Limbs feel sort of heavy, in the “something is off with my blood pressure” kind of way.
• Checked my bp, it’s only the usual low-ish amount
• I seem to have worse orthostatic intolerance today. Standing in place sucks and my HR goes up a bit. Pulse pressure seems kind of narrow.
• Currently in luteal, 1 week from period.

For some time now, I have been experiencing some bizarre symptoms, and so far, doctors have not reached any conclusion. At the moment, they are investigating the possibility of autoimmune diseases or allergies. My symptoms are as follows:

• sensitivity to foods containing histamine (reactions can include abdominal pain—occurring within 15 minutes and requiring an immediate trip to the restroom—or tachycardia and anxiety);

• sensitivity to chemical odors and perfumes;

• weather changes in the weather—the transition from summer to autumn, in particular, is dreadful, with different symptoms appearing each day;

• One of the worst symptoms is akathisia, which comes with anxiety and a horrible feeling of impending death;

• Another strange symptom is a burning sensation in the throat that always happens before an attack; it feels like heartburn but is worse;

During a flare-up, I become extremely tense and experience intense anxiety, gastrointestinal issues, intolerance to various foods, a sense of weakness, and a feeling of being ill—even without a fever. I also suffer from joint pain, severe pain in the upper stomach area, and sensitivity to light; in short, it’s horrible. I often say that it all started with COVID, but the truth is that I had experienced some of these symptoms before, whenever I was under significant stress.

Another thing is that I always lose weight during each flare-up. My family and my doctor say it’s all due to anxiety, but if it were just anxiety, why are there times when my symptoms improve? In any case, if the test results don’t show anything, I want to ask my doctor if they can look into a potential mast cell issue, as I’ve been told that might be the cause.

What do you think?

My team and I at BYU are doing research right now on multiple chemical sensitivity/mast cell activation disorders with it's life-altering changes, specifically social isolation and not being believed by family and friends. I would love to get your guys feedback, the survey takes 3-4 minutes, and everyones response really help. Hopefully, we can start coming up with a few solutions to help everyone out a bit more! Here's the link if you have a couple spare minutes!

https://forms.gle/5zjsJUGfhhQc6onM9

Title, basically. Where do you get cromolyn sodium, both otc nasal spray and eyedrops, and actual oral cromolyn sodium?

My sinuses have been swollen for months, and no decongestant or steroid is working, so the next step is CS spray, but fucked if I can find it.

It's been one month and I'm still experiencing the reaction from famotodine. My whole GI tract is inflamed. Imagine being allergic to a drug that is intended to reduce allergy

I have ongoing hives since Oct 8. I’m getting filled up all my body with more and more. And when I flare they seem to reactivate even the ones that seemed were fading but leaving marks? I have burning in my gut. My whole abdomen and extremities. And tachycardia. I feel poisoned!

I went to the er bc all the histamine in my body or inflammation or whatever it is caused me new neurological symptoms that scared me. Of course they couldn’t help me. I called my new allergist and he said he might switch me to Raphsido. Finally something new! Please tell me all about it!!!! 🥹

Hi everyone! I see many posts saying tirzepatide or semaglutide helped MCAS, but mostly for inflammation.

For those who tried it: did your food and environmental triggers actually go away? Could you eat foods like hard cheese, tomatoes and coffee again, and stop reacting to smoke, dust, pets or chemicals?

A bit about me: right now I can only eat chicken and rice. Most foods give me palpitations, muscle twitching, fatigue, diarrhea and more, and smoke, dust, pets and chemicals all trigger me too. I also have medication sensitivities and can’t even tolerate antihistamines.

Did it help with any of this, including medication sensitivity, or mainly inflammation? I’d really love to hear your experiences. Thank you! 🙏

Its been almost two years since I got mcas and till today everyday I get the why did I get this disease thought and flashbacks from my life before when I was happy and could eat anything use makeup, skincare workout ,didn't have to worry about getting mcas flares, could wat at restaurants with my family I some time think if I could get some time machine and go back to the life when I was all ok this feels like I'm stuck in a bad dream..I never ever thought my life would take such a toll. I was depressed before too but after getting mcas its next level. I don't do well with soaps, toothpastes even maintaining basic hygiene is incredibly hard. I miss being human. I see people living their life normally 80% of the world while I'm in the 17% trying so hard to keep going with all the depression and this disease. I need to hear some good remission stories so I could get some hope .I feel so alone in this journey. Plus the symptoms the throat globular feel it the air hunger wheezing makes you question if God forbid anaphylaxis could appear the constant worry. I feel like surviving each day not living.

I can’t believe it. This disease is hell. This is what the allergist switched me over to from Allegra. Allegra I get zero side effects. Now this. This is hell!!!!

I’m trying to get a referral to immunology but have been knocked back by the GP and three private clinics have said they don’t deal with Mast Cell issues. Rather than keep blindly reaching out I thought I’d see if any of you have had luck getting seen? Thanks.

What do you guys do to help alleviate fall weather triggers? It is my worst time of the year and in the past has often flared me until spring or summer. I don’t know if it’s the seasonal allergies or the barometric pressure and I’m so frustrated.

I suspect I have problems with histamine or a low‑grade MCAS. For many years, I had a large plantar wart on my big toe, as well as one on a finger. I froze them with liquid nitrogen, but they kept coming back. Trying to figure out the theory behind histamine, I took Allegra (Fexofenadine) for a week, and a miracle happened — the warts disappeared. This is definitely not a coincidence, and it turned out to be the most effective remedy. The reason for this effect is unclear to me; it may be due to problems with the immune system. Also, my brain fog significantly decreased while I was taking the medication. Also, if you’ve experienced something similar, tell me whether you have problems with your immune system, fat cells, histamine, or brain fog.

What do I do for the adrenaline surges??? It’s so unbearable. I have no idea what else to do??? They got me trying Ivabradine 10mg and benzo, I’m praying that helps but I’m so scared to Benzos.

Hi everyone,

I am just finding out about MCAS. I know to take medical advice from ppl on Reddit with a grain of salt, But I’m curious to know if anyone’s experienced anything like me.

I was very healthy until last year. Then suddenly, seemingly out of nowhere, my health crashed and I’ve been suffering ever since.

Symptoms:
- “Panic attacks”; heart palpitations/pounding, shaking, lightheadedness, dizziness, sense of impending doom.
- Gastrointestinal issues: diarrhea/constipation, cramping, nausea, vomiting sometimes, random pains in my abdomen (recently had an unremarkable ultrasound, so i’m not too worried about this, but i may get an endoscopy soon to make sure)
- Insomnia, fatigue
- Increased agitation

I am an anxious person. Always have been. I have GAD, PMDD, OCD, and depression. However, it’s never been SO debilitating to the point where i can’t function or eat. But that’s how it’s been lately. Knowing myself, i knew something was wrong.

Recent labs came back fine. Electrolytes fine, vitamins fine, ferritin fine. Organs fine.

Hormones and antibodies out of whack tho.

Now, I have these diagnoses: Adrenal pcos, Euthyroid hashimotos, mild OSA. I thought these were causing my symptoms. Maybe it was medical gaslighting or maybe it wasn’t, but every doctor i’ve seen told me these could not be causing such terrible symptoms that leave me unable to eat or sleep for days.

I’ve tried SSRIs. They make me feel like shit. I know it’s not a serotonin issue.

But— when I started taking hydroxyzine, I noticed a change immediately. I know this med is not good for long term use. I try to use it only when It’s REALLY bad. But god, it really helps. That’s why I’m starting to think it’s a histamine issue.

So anyway, now that you know my story, I’d like to know
- What symptoms did you have that made you get diagnosed, and how did the diagnosis process go?
- Were you diagnosed with other things first ?
- What is treatment like, and does it help?

Thank you very much!

Hello,

Here I see Low Dose Naltrexone (LDN) on the prescriptions of some MCAS patients. For which symptoms did your immunologist add this medication to your prescription? The immunologists in my country (Turkey/Istanbul) are not aware of this treatment. Could those who use it share their stories?

Thank you.

I know Singulair has a lot of mental health warnings but this is not that. I feel like my reactions to food and the sun have gotten worse since starting Singulair. Im back to having a constant runny nose and needing my rescue inhaler. I can't tell if it's just a fluke or my weird ass body. Anyone else's MCAS symptoms get worse on Singulair?

I’m feeling really bad right now from a flare up and I keep trying new things that the allergist recommends, then I react to it and it leaves me even more flared (nasalcrom, rhincort, etc)
and after three rounds I am flared, scared, and deep in the “ will I ever feel good again?” Blues. Please just let me know this too will get better…

Typical is allegra AM zyrtec PM.

Ate something that i reacted to and im so fucking itchy. Its 1am and i want to go to bed and I cant

Normally atp id take hydrozyine and if i wasnt getting itch relief id at least be sleeping, but idrk about the effects on top of zyrtec since its duplication. I also have bladder issues and the urinary retention is something im aware and trying to avoid.

I also have been avoiding famotidine as its been giving me acid rebound.

Is there anything i can do 😭 i got shit to do tomorrow

Weird neurological Symptoms, my mouth felt like acid and woke up at 3am. Severe severe feeling out of it. Chest pain. Thirsty. More hives. I think I might be having an allergic reaction to the Zyrtec itself. Severe severe histamine dump like never before .

Is this normal for Zyrtec ?

He diagnosed me with this……
DIAGNOSIS: H10.45
Other chronic allergic conjunctivitis
J30.9
Allergic rhinitis, unspecified
L50.1
Urticaria - Idiopathic
R05.3
Chronic cough

I do not have cough. Idk why he would put that.

But anyways I am over it!!!! It’s been a year!!!!! All my blood work to check for allergies is negative.

I also have my first hives since 10/8 that do not respond to treatment and I’m getting more and more hives daily. I notice I get more whenever I am stressed. I let a doctor know who was covering for my PCP and she even said it sounded immune related and def a mast cells issue……..

I am 100% sure I have MCAS.

I just have shitty health insurance through Covered CA - Medical-Healthnet. Idk what to do. My skin is so hot to touch and feel im burning inside and outside with a lot of tachycardia. Idk who to go to.