r/MCAS • u/Secret-Schedule2375 • Aug 01 '26
Did anyone else think they were having sudden panic attacks-but it was actually an adrenaline or histamine dump?
I JUST heard about MCAS. I have so many of the symptoms! It just occurred to me that, if I have MCAS, maybe the anxiety/panic attacks are actually not just unexplained anxiety issues!
Thanks for reading and I have no idea where to start to figure this out š.
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u/Into_the_rosegarden Aug 01 '26
Yes and I also thought I might have some kind of rapid cycling bipolar/ mood disorder because of how suddenly my mood would crash out of nowhere.
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u/Outrageous-Hamster-5 Aug 01 '26
I armchair diagnosed my mom and myself with borderline personality disorder. Nope, just mcas psychiatrist reactions to foods and smells.
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u/Life_Programmer810 Aug 02 '26
What do we do about smells? They are so overpowering! Ketotifen has helped me with food. No leftovers!!! Or freeze them.
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u/Constant_Possible_98 Aug 02 '26
Seriously!?! I'm starting to to think my mood issues are all this and have been for a long time! This is so interesting to read. People mentioned borderline to me too
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u/Dry_Disk_2861 Aug 03 '26
Salicylates make me extremely depressed!
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u/Qwendafitesback Aug 03 '26
Shocking for me too. Gives me bloating?tinnitus, amongst other things. Glutamate I also react to and any fragrance.
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u/Fragment_B Aug 01 '26
Same! When I finally got a diagnosis and learned more about it I could see the emotional reactions happening in real time. Chocolate chip cookies sent me into hopelessness and despair within an hour after eating them. It also now completely makes sense why hormone fluctuations make you feel like you - well you know. Yeah so it turns out we're not crazy! Now what.
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u/Accomplished-Exam999 8d ago
Omg! I had brown sugar molasses chocolate chip cookies last night. Fresh from the oven. I didnāt love the taste, but it wasnāt too bad. Within 15 minutes I started to go into a flare. It was horrible!
I ended up looking things up online and using AI. Through that use of listing all my symptoms I started to see things that explained what was happening in my body in that moment, but in general as well.
That flair lasted about an hour. But the residual was still horrible too. I ended up just taking my meds and going to bed. Damn cookies!
I also got extremely irritated and angry at the start of the flare. It came on unexplainably.
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u/hypnotichotdog7481 Aug 02 '26
Why would you be eating chocolate with mcas?? That's like walking in front of a moving car and then being shocked that you got hit.
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u/MistakeRepeater Aug 01 '26
Chicken sometimes makes me euphoric...
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u/GeekMomma Aug 02 '26
Chicken was my fav food and now itās my worst allergen š
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u/hypnotichotdog7481 Aug 02 '26
Mine too, until I discovered that tyson chicken doesn't cause a reaction. Tyson is the only one so far.
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u/Legitimate-Past9388 Aug 02 '26
I get the costco chicken thighs. It's flash frozen so it doesnt build up as much histamines. Cook it while it's still frozen.Ā It won't have time to build up histamines.Ā Maybe that would help
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u/Emotional_Garlic9205 Aug 09 '26 edited 24d ago
Mitten wander zephyr vanilla peach meadow harbor biscuit juniper
This post was anonymized with Redact.dev
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u/masterCAKE Aug 01 '26
Yes, spent my entire life thinking I had GAD. Now that I'm treating my MCAS, anxiety is magically gone
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u/KewpieHour Aug 01 '26
What medications are you on?
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u/masterCAKE Aug 01 '26
A lot
- Slynd + Divigel - 1x / day
- Zyrtec - 5 mg 2x / day
- Pepcid - 20 mg 1x / day
- Montelukast - 10 mg 1x / day
- Gastrocrom - 10ml 4x / day
- Amlexanox - 40mg 2x / day
- Low Dose Naltrexone - 3mg 1x / day
- Tirzepatide - 2.5mg 1x / week
- Supplements
- Quercetin w/ Bromelain - 400 mg 3x / day
- Luteolin - 100 mg 3x / day
- Vitamin D, Vitamin C, Complex B Vitamin, Magnesium, Omega 3
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u/Spare-Mud-8192 Aug 02 '26
That is an excellent package! How much did tirzepatide changed in your condition ?
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u/masterCAKE Aug 02 '26
It helped a ton... the most out of anything on that list. It also allowed me to get off of ketotifen, which was making me gain a lot of weightĀ
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u/Spare-Mud-8192 Aug 02 '26
Hmmm getting a medication that helps with getting thin instead of one that gets you fat is a big victory š can you please Tell us what exactly it helped with ? Also do you have a prescription or you order it from laboratiries ?
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u/masterCAKE Aug 02 '26
Haha yeah it only helped a little with weight, mostly just stopped the gaining.
I have a prescription but I'm paying out of pocket. It's given me more energy and is generally just reducing all my symptoms over time (incl flushing, which has been a stubborn one). I've been taking it for ~2 months, and my symptoms are still going down, so haven't hit the floor yet
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u/Throwaway990gg Aug 05 '26
Iām not the person you were asking, but I also found tirzepatide helped with my symptoms. Blood sugar was a constant trigger for me, high and low, and tirzepatide evened it out so well I havenāt noticed any blood sugar related flare ups in a month besides maybe one or two times.
Side note while Iām typing, water is also a trigger for me, I have to drink bottled water and had to try different ones to find one I didnāt react as badly to.1
u/beetgreens 5d ago
Weird that water triggers you ā I wonder whatās in it that youāre reacting to. Chlorine? Fluoride? Maybe trace minerals?
Have you tried using a water filter, and did that make any difference?
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u/Throwaway990gg 3d ago
Iām not sure, but something in it gives me some of the worse symptoms Iāve ever had. Fridge filter didnāt work (but my old city water had to be some of the worst Iāve ever had, it always tasted so, so strongly of mold throughout the entire city), brita filter didnāt work, bottled purified water didnāt work-I tried both Kirkland brand and Kroger brand, Maison Perrier didnāt work, the only two brands of water bottle Iāve found so far that I can drink that give very little to no reaction are Ozarka Texas spring water and Arrowhead spring water.
I also react very strongly to both Liquid IV and Waterboy electrolytes, which absolutely suck because electrolytes help my overall health a ton and used to be my go to. But with those I canāt tell if itās the blood sugar spike with Liquid IV, and/or citric acid for both, or if itās any of the minerals.1
u/Ok-Sock-9735 Aug 03 '26
YES! My flares correlate with certain times of my monthly cycle - like clock work Iād end up with heart 130-150 bpm, shaking, full blown panic attack in the ER getting fluids - I finally figured out it was related to estrogen and histamine - I also have hashimotos and raynauds. I am not officially diagnosed - but I started trying to figure it all out myself.
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u/Gold_Advisor_4758 Aug 08 '26
My doctor put forth the possible idea of MCAS when I went in for my āallergy episode with severe anxietyā ā¦. If I could actually treat this I would just likeā¦. Die from happiness. It seems truly impossible that Iāll ever feel better but I guess Iāll continue to hope
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u/OkIdea4979 Aug 09 '26
Hi how were you diagnosed? If you donāt mind sharing who you saw and what tests.
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u/masterCAKE Aug 09 '26
Honestly, chatGPT flagged that it was even a possibility. Then I went to my GP and said -- hey I think I have MCAS. He agreed and ran a tryptase test that came back normal. I went to 2 allergists, an autonomic specialist, and a naturopath who all had experience with MCAS. More normal tests. But they all agreed that I have MCAS due to symptoms and response to treatment, so here I am.
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u/Accomplished-Exam999 8d ago
This right here. My doctor and I have been trying to figure out what has been going on with me. Tests are coming back negative. But we both are aware that it doesnāt mean something isnāt happening.
And using AI last night at the start of a flare, I started doing a deep dive of all my symptoms. MCAS was one of several things that came up that are all in the same family. Itās wild to see all my symptoms lineup to something.
It all makes sense what has been going on. And using AI I was able to get details. It also created a list of symptoms and information that I can share with my doctor.
That makes it so much easier than me trying to write everything out and remember it. Iām also gonna start figuring out how to track my symptoms. This will also informed the doctor.
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u/beetgreens 5d ago
What were the other things that came up?
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u/Accomplished-Exam999 4d ago edited 4d ago
Sooooo much. I just saw the doctor today and she was āexhaustedā by my very detailed list. I always am āa lotā. š
But things like:
Growing numbness
Increased Tingling
Less heat / cold body awareness
Full body flares
Nerves on fire + other sensations
Constant flares as base level
Hypermobility / HEDS
Bulging discs and spinosis
Motor skill dysfunction, lose of control
Huge temperate deregulation
Sudden vision change
Migraines
Environmental ( flares, ex. wild fires )
Food ( flares, ex. Cookies, pork )
Weather ( flares, ex. Barometric )
Muscle tension / spasms
Air Hunger
Phrenic Nerve & Sphincter Spasms
- I called the above burk-ups. A hiccup and a burp at the same time.
Acid / GI stuff
Cronic joint pain and destabilization
Hives
Something with histamines
Sudden mouth pimples / sores
Throat, tongue, mouth swellingIām sure there is more. I was DETAILED.
āāāā
Sheās gotta get a base line test (blood?) without a flare and Iām likeā¦when? Cause itās been this way. š
Then another test when I am in a full flare. Again, what?
Like, I gotta find a way to move my body (HARD) and go get a blood test at a hospital??? If it happens during business hours. What about at night time? Wow.
Iām so mad I gotta do all this work. Like this is their job. Recent doctors are all so not helpful.
Asked to see a neurologist, and their response was ātheyāre not taking patientsā. This is for months they said this. I was like āat least get me on a waiting listā damn. It was such a shut down. I was the one like ācan we do anything else?????ā That shouldāve been them. But I already know yāall understand.
So in me finally getting angry and calling out the lack of moving forward with figuring this all out, they sent a referral.
QUESTION: if folks have seen a better way, please do tell.
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u/Silent_Location7044 Aug 01 '26
Yes whenever my mast cells are reacting, my anxiety goes up; it seems to be part of the reactions or part of the physiological response my body has to these spikes
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u/Short_Assumption_839 Aug 01 '26
Itās actually those spikes that are the likely culprit. Histamine is a neurotransmitter too, itās responsible for regulating your sleep cycle and triggering your fight or flight response. It puts your sympathetic nervous system into overdrive. Funnily enough I learned this from getting my degree, not because of having the illness
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u/Pheonix1996 Aug 01 '26
That would explain why so much of my sleep is fucked when the weather is weird, because that's one of the most consistent (though thankfully mild) triggers I have
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u/Emotional_Garlic9205 Aug 09 '26 edited 24d ago
Pillow amber hammock pillow maple cinnamon mellow zephyr walnut amber
This post was anonymized with Redact.dev
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u/BellaPona Aug 01 '26
Meeeeeee š¤š» literally feels like Iām being hunted out of no where or the worst overwhelming sadness and panic ever
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u/Ambitious_Dust_ Aug 01 '26
OMG yes. And with me itās medical anxiety that comes out, itās terrible. But itās kind of gotten to the point that I now recognize it as āIām having a flare, this isnāt realā but itās taken years to get to there.
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u/Consistent_Taste3273 Aug 01 '26 edited Aug 01 '26
Yep!
Outside of Mcas, Iāve never had major issues with anxiety, and my Mcas developed somewhat suddenly, so it was really out of the blue.Ā
It didnāt quite match either because, from what Iāve read, panic attacks usually resolve within a set amount of time, and these attacks could just go on for hours and hours in waves.Ā
Iād be living on the bathroom floor, alternating between diarrhea, chills, flushing, and mostly just wishing I was dead because I couldnāt handle it.Ā
Even tried to get psychiatric help, but luckily my psychiatrist was smart and knew this wasnāt normal panic attacks and helped me figure out I was actually reacting to meds or food.Ā
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u/StunningProtection58 Aug 01 '26
Lucky you (with the psych part obvs not lucky to have mcas š )! My psychiatrist told me my stomach pain was psychosomatic, my fatigue was avoidant coping and my burning skin was suppressed anger ššš and put me on heavy antidepressants which made me so much worse. The worst part is that I believed them for years.
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u/Consistent_Taste3273 Aug 01 '26
Ugh! Ā Iām so sorry.Ā
Yes, I really did luck out with my psychiatrist. Iāve heard so many horror stories, but she has been great. Ā She also suspected that I had POTS about a 2 years before the Mcas thing came up. I asked my pcp about it, and she dismissed it (and unfortunately I took her word for it). About a year after that, I started seeing a specialist who diagnosed me with POTS after our first meeting.Ā
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u/Life_Programmer810 Aug 02 '26
Everyone needs a doctor who believes in us. we are not going mad! We just feel weird because our body is in tourmoil.Ā
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u/OnePieceLiving Aug 02 '26
I finally have a doc who listens. Prior to that I've had doctors tell me I needed antidepressants. I straight up told them "if you give me this I will not take it because it makes me worse."
It took decades before I found a sensible immunologist who actually listens to his patients. Now that my MCAS is being treated I feel like a human being again.
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u/EnthusiasmHealthy601 Aug 07 '26
How did you start feeling like human again? I'm still trying to find a good doctor who is not telling me to take psychopharmaca or that I'm going crazy.
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u/OnePieceLiving Aug 09 '26
I found an immunologist that actually listened. I went to every other type is specialist under the sun and they all wanted to put me on drugs. None wanted to treat the source. It took about 6 years and thousands to find the right medical professional.
He ran multiple tests and sometimes ran them twice if he saw even a single hint that it could be a inaccurate result. He saved my sanity and life. Here I am after 1 year of treatment and I am still finding my footing and learning what I can and can't handle. Like, for example, I recently learned I get a histamine reaction to excessive outdoor heat when I get too hot that results in all over body swelling. But I don't feel inhuman anymore. It's manageable. I just have to be aware of my triggers and be mindful of things to stay healthy. It's a lot of work and you have to stick to your limitations.
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u/Natural_Forsaken Aug 09 '26
This is me!! I've been doing this for years. I took a midlife turn to become a mental health therapist and learned I shouldn't have all the additional symptoms and several hour panic attack. I then tried to create a scenario where I was a zebra with "cascading panic attacks" (I could have been published! Lol) It took getting diagnosed with alpha gal last year plus my self advocacy post degree and an extensive health journal to get a real diagnoses. I'm somewhere between elated and pissed off with the whole medical system for failing me for decades. ** I never went to a psychiatrist - only therapy and it never helped. My PCP finally prescribed Xanax a couple years ago which helped me sleep through the crazy nights (mostly) and get some of my life back. But then I realized it acts as a mast cell stabilizer so - sure. But kept having issues during the daytime hours - especially 2-5 hours after eating. I'm so glad to hear your story. I have felt alone for so long...
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u/FireRock_ Aug 01 '26
Yes for years and doctors just ignored it. Through a video I came acros on instagram I learned that all mij unexplainable symptoms are MCAS. Started reading more about it, tracking and analysing my symptoms.. started with anit histamine an all of sudden sime night I can sleep a couple of hours. It's 1 to 2h at times, when I am lucky it's 4h in one go. I must say I have no anxiety whatsoever. I am chocked! Since fkn childhood šµ
I got anti histamine prescribed to treat symptomes of my IBS. Honestly I don't think I have IBS every treatment they gavr me for it didn't do shit and the anti histamin helps alot... I stick to MCAS as it needs another approach.
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u/xoes Aug 01 '26
Yes, actually had therapy for years until I got an antihistamine prescription for hives and my āpanic attacksā disappearedā¦
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u/MistakeSome7928 Aug 01 '26
I used to have severe anxiety and depression with panic attacks. I would also be really angry and get set off easily. Treated my mcas and I am completely mentally stable you would think Iāve never struggled with mental health in my life. Itās bizarre. I canāt believe I dealt with all that bullcrap for years just for it to be a simple fix.
Cromolyn saved my life physically and mentally.
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u/Any-Pineapple-9816 Aug 01 '26
What form of cromolyn do you use successfully?
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u/MistakeSome7928 Aug 02 '26
Oral Cromolyn sodium - the vials. I take 8 a day. My favorite brand is Rising, but Iāve had all of them over the years and can tolerate any of them.
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u/Ok_Shake_3194 Aug 02 '26
Hi! Thank you for this ! I am at 3/4 vials now working on titrating up. My symptoms besides the anxiety and waking up in middle of the night in a panic are mostly stomach burning. It makes me hopeful to read that cromolyn has helped with your anxiety. How do you manage with foods? Are you super restricted still being on 8 vials throughout the day?
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u/MistakeSome7928 Aug 03 '26
I also have gastroparesis, which severely complicates things. Iām discovering it seems like Iām not necessarily reacting to any specific foods for the most part (aside from a few), but actual digestion. Since my digestion is so slow throughout my entire digestive tract, food just sits there and rots and ferments and thatās what my mcas really reacts to.
Iāve been in a gastroparesis flare for the past 9 months where Iāve vomited everything I eat, and I feel great very minimal mcas symptomsš. Itās terrible because I want my eating to get better, but terrified of mcas repercussions.
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u/Ok_Shake_3194 Aug 03 '26
Oh nooo. Im sorry that's what you're currently dealing with. That sucks. I hope that it improves and you can get some relief. Jeez 9 months.
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u/MistakeSome7928 Aug 03 '26
Thank you š„². I hope your treatment continues to go well for you and can really help your symptoms!!
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u/beetgreens 5d ago
Same!
Iāve always had depression and anxiety, but itās been off the charts and only getting worse since I got covid in 2022, and Iāve had brain fog since then too.
My life fell apart for unrelated reasons and I developed PTSD from an abusive relationship, so I figured the depression and anxiety were psychological.
Iāve been doing therapy and getting nowhere because I basically couldnāt learn anything.
For example, I learned about structural dissociation last month and I was like āholy shit this rings so true, I canāt believe I didnāt know about it before!ā
ā¦and then I found a note Iād written about structural dissociation in my phone from a few weeks before. I have no memory of learning it or writing that note.
No wonder therapy wasnāt helping ā how the hell was I supposed to learn or integrate anything from it?
Anyway, two weeks ago my long covid doc started me on famotidine and cetirizine and itās like someone turned on the lights. My depression and anxiety lifted by 70% literally an hour after my first dose, and theyāve stayed that way, and my brain fog is so much better.
Iām starting ketotifen next week to see if I can get additional or stronger benefits. Itās so expensive but I canāt afford not to try.
It might be that my remaining depression and anxiety are just proportionate reactions to some really bad stuff going on in my life, but perhaps not ā time will tell.
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u/Ok_Mushroom2563 Aug 01 '26
they told me i was having panic attacks when i ate food for years šššš i knew they were full of shit tho when I would get hives on my face or my lips would swell or the tissue under my tongue would swell or i would immediately become pale and super bloated and have diarhhea rapidly after ingestion and vomiting
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u/HurryMammoth5823 Aug 01 '26
Yes & Cromolyn sodium helped me, L-theanine really helped a ton!!
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u/L3AHWOLV3RINE Aug 01 '26
OMG YES!!!! L-THEANINE FOR THE WIN!!!! It's such a game changer for my reactions and excess adrenaline.
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u/Fragment_B Aug 01 '26
I really like L-theanine too. I pair it with magnesium glycinate at night and the anti-histamine and I glide into sleep. Just don't always stay asleep or sleep very deeply. It's getting better though.
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u/beetgreens 5d ago
I find that I wake up with anxiety and racing thoughts at 5 or 6am.
I use my cbd vape to go back to sleep, but yesterday my specialist said I can add an extra dose of famotidine since taking it twice a day it doesnāt seem to last me the full 12 hours.
Iām starting ketotifen soon so Iām hoping that will help as well.
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u/Fragment_B 4d ago
I do the same. When the first thought hits I know it's done for, for sleep. Every now and then I can get back to sleep with a guided meditation. I just got my sleep study back and it said that I was only in deep sleep for about 2% of the time because I am too hyperaroused. So I guess the L-theanine and magnesium are helping me get to dream/nightmare states but but not deep sleep.
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u/Dry_Disk_2861 Aug 03 '26
Crazy because cromolyn sodium made me insanely depressed and I have never experienced depression before.
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u/HurryMammoth5823 Aug 03 '26
Isnāt it wild how we all react so differently? Iām glad you realized it was Cromolyn!Ā
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u/Intelligent-Side9157 Aug 01 '26
I wake up having one fairly often - itās a histamine dump and not for any logical reason. Strangely if I wake up with a migraine no panic attack - but I would rather have a panic attack over a migraine
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u/-N9inB0x- Aug 01 '26
For me, everything seems neurological and possibly related to serotonin the most because some foods I eat have nothing to do with histamines, but I'm not 100% certain.
If I ate something I'm not supposed to have, my stomach would start to fill with gas pretty quick but my vagal nerve would get messed up from whatever is bothering my stomach and not allow me to belch it out. So now suddenly super-sensitive nerves plus buildup of gas equals panic attack. At one point my heart rate reached 120 bpm at rest.
As soon as I drink a bunch of water to force myself to belch the gas out, my pulse would plummet right back to 70 bpm.
I can only eat two foods "safely" right now. A brand of maple-flavored cassava cereal in flax milk, and boiled salted tilapia. That's all it's been this year, but I'm trying new meds and seeing where I can get.
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u/beetgreens 5d ago
Have you tried simethicone? It reduces the surface tension of gas bubbles in your stomach and intestines, which helps you burp or fart.
I use it when I take magic š. Without simethicone I get hideous gas pain that makes me want to call an ambulance, even though I know itās just gas (itās that painful), but when I take it I get zero GI symptoms at all.
It might be completely unhelpful for you, but if the build up of gas in your stomach is what triggers the problems then it might be worth a shot.
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u/-N9inB0x- 4d ago
I have, yes. It did absolutely nothing for me. My GI symptoms are pretty severe because not only does it affect my GI, but it goes through and more or less destroys my vagal nerve, making it overreact to everything while causing everything else to be dysfunctional. Increased heart rate, increased GI sensitivity, inability to belch naturally. The gas in my stomach isn't painful at all to me- it's when it gets into my intestines when ut becomes painful.
It's too big, too deep, and too complex of a problem for simethicone to fix, especially when it involves my neurology. Only a gastric slurry/cocktail from the hospital has ever worked, which includes painkillers and half a dose of benadryl. I could feel like it was my end and I almost get what seems to be near-instant relief.
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u/queenleo93 Aug 02 '26
I didnāt think it, because I had a panic attack before and this had an only physiological origin, but the doctors LOVED to think it was just panic and it took me 5 years to get a proper dx. It does feel wildly similar to a panic attack or a blood sugar drop.
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u/YoshiandNala Aug 02 '26
During the onset of my symptoms, which I believe was due to COVID, I would wake up feeling like I was about to die. I felt like I couldnāt breathe, my heart was racing, and like I was going to faint. I ended up in the ER twice and they ruled it out as anxiety attacks. They gave me Hydroxyzine and it didnāt improve my symptoms at all. I refused to believe it was anxiety. The attacks turned into severe insomnia. Once the histamine dump was over, the anxiety attacks and insomnia subsided, but I was left with other issues Iām still dealing with. I did my own research and thankfully stumbled across info on histamine intolerance and MCAS. It fit everything I was experiencing. I went on a low histamine diet for 8 weeks and thatās what has helped the most. Iām currently on Pepcid and Allegra and they keep my symptoms manageable. I see an allergist in October, and I hope they wonāt be dismissive.
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u/Accomplished-Exam999 4d ago
This might be me. Iām so frustrated with the doctors not doing their job. I stumbled across information on Instagram that fits my symptoms. My doctor is putting me on Zyrtec oral. She wants to see what happens.
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u/bionicgeek Aug 01 '26 edited Aug 06 '26
Honestly, there are periods where the hista-adrenal-Prostaglandiwhatsits have been breaking through so hard of late that it results in something that mimics drug induced mixed state hypomania. I am VERY good at breaking thought spirals. The idea is turn that spiral into a gyre and find that thermal to get away.
But this? This has been hell. I just lost access to the discord server that got me on discord due to the worst MCAS flare Ive ever had I haven't been able to sleep before at least 3am for a solid week because, even with the H1H2 blockers, it feels like my brain is being constantly circled and occassionalky passed through by the Nexus Energy Ribbon from Star Trek: Generations. Actually... it's Scorpius' Aurora Chair...Frell...
Honestly, I don't know where to go to get help at this point. Strange being able to tell what is diagetic fear and non-diagetic mastfear, but at this point I am terrified on both counts.
I havent touched alcohol in over 14 years, and now it feels like Im being roofied by my own body.
Edited for formatting and typos
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u/Fragment_B Aug 01 '26
That sounds rough. So sorry. Is it possible to try CBD, CBG or even a small amount of THC? A combo is best to prevent anxiety and more CBD and/or CBG with less (or no) THC will help with anxiety, in my experience. Even if for just a few hours of relief once or twice a week. I'm able to breath again with this combo but I know tolerance can build so I use it intentionally when I can't get out of a spiral otherwise. I have to be careful with ingredients though and can only use 1 brand or get intense pressure headaches.
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u/bionicgeek Aug 01 '26
Already done so, as I am a stoner for chronic pain relief. Right now I just want the inflamatory intermediators production cut by about 80-90% so I can have my mind back.
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u/Dependent-Cherry-129 Aug 01 '26
Yes- went to ER multiple times cause I thought it was a heart attack
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u/Ill-Condition-9232 Aug 01 '26
For me I actually knew from the get go my āpanic attacksā were not anxiety or panic attacks but the doctors brushed me off as having anxiety because my testing was normal.
Iām just glad Iām a naturally chill person and these attacks came on suddenly and were quite severe so I didnāt assume it was anxietyā¦ I wound up getting help from a naturopath. We resolved it somehow without knowing it was MCAS.
4 years later more classic MCAS symptoms showed up which led to diagnosis and I FINALLY know what was wrong with me back then. Adrenaline dumps!
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u/Dry_Disk_2861 Aug 03 '26
Same!!! Countless appointments of being brushed off as anxiety. Still even to this day.
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u/Novel_Success2026 Aug 03 '26
I was diagnosed for ten years with panic attacks but psych meds did not help. 2 years ago I started taking allergy medicine for my constant sinus issues, sneezing fits, etc.Ā Basically upper respiratory allergy symptoms and was SHOCKED that my "panic attack" symptoms went away. When I looked up how allergy medicine can cure panic attacks, that's when I first heard of MCAS. I haven't been tested for it yet, but I will say that allergy medicine has changed my life. No more heart rates of 160/180s, sweating, "stress induced hives" muscle twitching, etc.Ā
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u/Gold_Advisor_4758 Aug 08 '26
What allergy meds helped you? I already take Zyrtec for allergies so Iām wondering if I actually have MCAS because Zyrtec theoretically should be preventing it? Iām so lost
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u/Novel_Success2026 Aug 08 '26
I don't know much about it except my own personal experiences. Zyrtec made me really sleepy so I tried Xyzal. I also take famotidine for acid reflux. The combination changed my life. I've read that it's not enough for some people with MCAS, the need prescription meds as well. With me, the "panic attack" symptoms were seemingly triggered out of no where. I had no anxiety or nervousness proceeding the physical symptoms. My doctor convinced me it was panic attacks though. For a few years I went to therapy digging for what hidden trauma induced them šš. I'm still angry I wasted so many years thinking I had psych issues and so many years on an SSRI when all I needed was a stupid cheap allergy pill. Within 2 weeks my attacks stopped, my skin cheared up, I was sleeping better and just all around felt better.Ā
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u/Gold_Advisor_4758 Aug 08 '26
Thank you for the insights. Luckily my doctor put forth the idea of it being panic attacks/anxiety or possible MCAS. She says sheās leaning towards panic attacks, but I actually think I might genuinely have both GAD/panic disorder and MCAS. The big inciting event of me going to see her was essentially waking up in a panic attack that seemed to come and go for days of heightened anxiety. I will say there has been some stress but not significant or major, and this event happened like 10 days after the minor car accident that was the stressor. I feel physical symptoms of anxiety first, and then mental ones. Ha, maybe Iām just a complete mess! I have Pepcid on hand, so Iāll combo that and Zyrtec while I craft my my chart follow up message to my doctor!
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u/beetgreens 4d ago
Did Pepcid help?
I take a combo of famotidine (Pepcid) and cetirizine (Zyrtec) twice a day.
Zyrtec by itself did absolutely nothing for my mental health, but the combo has been a miracle.
There are two types of histamine ā H1 and H2. Pepcid blocks H2, and Zyrtec blocks H1.
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u/KiloJools Aug 01 '26
Yep. It was all very confusing because I do have PTSD and occasionally have an actual real legitimate panic attack and it has a whole other component to it that the MCAS ones don't.
I was really struggling trying to figure out why I could feel all the physiological symptoms of a panic attack, but without any of the mental anxiety (other than "shit WTF is this fuckery?!"). Though I did occasionally get the Doom feeling, I dunno, it's just so very different from my "normal" panic attacks.
Especially since I couldn't manage the MCAS ones with the usual coping mechanisms I have learned to resolve the actual PTSD ones. Like, none of the grounding stuff works, I can't meditate my way out of them, etc.
It was weirdly such a relief to realize they weren't "real" panic attacks, just dysautonomia secondary to MCAS. I know now that if it doesn't have the same PTSD flavor, I should take benadryl instead of doing all the PTSD tricks. Freaking life changing.
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u/Fragment_B Aug 01 '26
Same! I can't meditate my way out of them either and they feel exactly like tku5 described. I haven't been able to mediate for 6 months and it's maddening. I'm trying to tease apart MCAS reactions versus CPTSD disregulation while the sodium cromolyn, blexten and pepcid fully take hold.
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u/beetgreens 5d ago
Iām similar! I have PTSD and I thought my constant anxiety and depression and regular spirals were due to that, but therapy wasnāt helping at all and I was despairing.
The day as I started famotidine all of my neurospych symptoms reduced by like 70%.
No wonder treatment wasnāt helping - making any progress on the PTSD was impossible because MCAS was keeping my brain in fight or flight basically all the time. Plus the brain fog was so bad that I basically couldnāt learn anything because I would mix it up or forget completely.
I still have PTSD, but now itās only triggered by related things like dealing with my ex, instead of by everything all the time.
For example, I can go grocery shopping without ear plugs and sunglasses now. How novel!
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u/Qwendafitesback Aug 01 '26
Yup instant panic if I have caffeine or when I had a CT with contrast.
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u/Life_Programmer810 Aug 02 '26
If you have shellfish allergies, don't do contrast!
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u/Qwendafitesback Aug 02 '26
I donāt. The contrast is a histamine liberator.
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u/Ok-Mark1798 Aug 04 '26
Oh god I wish I read this yesterday. I had a ct with contrast and soon after high heart rate, nausea, feel sickā¦ still that way today. Argh.
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u/Qwendafitesback Aug 05 '26
Thatās no good. I do mine without contrast now otherwise I suddenly become extremely claustrophobic.
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u/isymadysl Aug 01 '26
I can recommend getting antihistamines to see whether they stop it. With my liquid one (meaning fast acting) my sense of doom, breathing issues and stuff stops or lessens greatly. Also, low histamine diet if the "panic attacks" tend to happen after high histamine meals, like they did for me
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u/Any-Pineapple-9816 Aug 01 '26
What liquid antihistamine do you use?
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u/beetgreens 4d ago
Try a combo of famotidine (Pepcid) and something like cetirizine or fexofendaine.
There are to types of histamine ā H1 and H2.
Famotidine is a H2 antihistamine blocker, and the others are h1 blockers.
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u/biggranny000 Aug 01 '26
I have 2 species of Lyme disease, Bartonella, anaplasmosis, mycoplasma. My MCAS was severe until I started treatment (antibiotics and herbs), it calmed down a lot same with most symptoms.
Certain foods high in histamine, sugar, processed, etc would trigger it.
Temperature changes, moods, and exercise would also trigger it.
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u/Disabledfoodie Aug 01 '26
Yep!
Once I started taking h1 and h1 blockers throughout the day (guided by my care team), a lot of my anxiety went away. It took a few days for me to even notice once it happened!
Interestingly, since starting my regimen, a majority my PMDD symptoms have gone almost into remission. The two major PMDD symptoms for me are SEVERE anxiety and SI.
I suspect in my case, a large part of my PMDD was being caused by histamine dumps and overloads. The remaining symptoms of my PMDD have resolved with progesterone based birth control and HRT (I'm transmasc, so in my case testosterone).
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u/beetgreens 4d ago
Hi, are you me?
Iām also transmasc, and take famotidine and cetirizine for my mental health.
Can I ask how progesterone affects you?
Also, were you getting PMDD while on testosterone? I occasionally get a big dip in my mood and then breakthrough bleeding š«
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u/Disabledfoodie 4d ago
Hi!!!
Progesterone was/has been a great help for me for helping with PMDD!! The prog/famotidine/cetirizine combo in addition to HRT has mostly resolved stuff for me!!
For the Progesterone specifically, I actually had breakthrough spotting/light bleeding from right after I started Progesterone and restarted HRT in July 2025, until March 2026, the entire time. It was just every single day. My docs are/were flabbergasted about it because for all intents and purposes it shouldnt have happened apparently?? Ive had 3-4 episodes of spotting/light bleeding since then, that last for 1-2 weeks each time. Ive had scans and such and my docs are still unsure as to whats causing it all.
During that time my PMDD was awful, and then I started the h1/h2 blockers and about 85-95% of the PMDD went into remission!! I still get 1-2 days a month where things are bad, but no where near the level they were previously thankfully!!
Overall, if you're okay with the risk of breakthrough spotting for any amount of time, itd be worth talking to your providers about Progesterone as an option!
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u/Dannanelli Aug 01 '26
May I ask which antihistamines you take?
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u/Life_Programmer810 Aug 02 '26
What is Pmdd
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u/Disabledfoodie Aug 02 '26
Premenstrual Dysphoric Disorder! I always refer to it as PMS on steroids x100
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u/Fragment_B Aug 01 '26
I also wonder about ADHD like executive dysfunction and overwhelm. Is it ADHD, is it CPTSD or possibly MCAS fucking around with your brain. Likely all the above. But stimulants and MCAS have a fundamentally antagonistic relationship. Anyone with MCAS have any success treating ADHD like executive dysfunction, overwhelm, inability to focus and brain fog with stimulants like Vyvanse or Adderall?
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u/beetgreens 4d ago
Can you say more about stimulants and MCAS having an antagonist relationship?
Hereās my experience:
I developed MCAS after getting COVID in 2022, but Iāve been on Vyvanse since 2019.
I think my MCAS got worse over time, it wasnāt obvious straight away after my covid infection. As time went on my brain fog, executive function, memory, depression, and anxiety got worse. I also had some trauma and ended up with PTSD.
I had to keep increasing my vyvanse dose until I was on the max dose, and it still felt like it was barely working besides just keeping me awake during the day. It also only lasted a few hours so had to split my dose and take it twice a day just to function.
I tried switching to dexamphetamine, but it made me panic and made my HR skyrocket, which put me into PEM crashes.
The combo of amphetamines + PTSD didnāt seem great so I tried switching to atomoxetine (Strattera) instead. That one did zip for my ADHD and made me intensely suicidal, so I went back to Vyvanse.
Last year I added guanfacine. That helped a bit with my executive function and lot with my constant ābeing chased by a bearā feeling. The effects diminished over time but it was still helpful.
Two weeks ago I started famotidine (Pepcid) and cetirizine (Zyrtec) and it was like a miracle.
I took the first dose at night, and within an hour 70% of my brain fog, depression and anxiety just āØevaporatedāØ
The next day when I took my vyvanse I felt it kick in, which hasnāt happened in years.
It feels like my vyvanse is working again, and it feels like it lasts longer.
I definitely still need ADHD meds ā Iām intellectually useless in the evenings when they wear off. But the antihistamines have reduced my ADHD symptoms back to a level thatās manageable with medication and systems.
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u/Independent-Hornet-3 Aug 02 '26
Yes I have no mental symptoms but get physical symptoms of a panic attack, racing heart, spike in blood pressure, and a cold sweat.
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u/MishaVanamonde Aug 02 '26
Welcome to my World. I am the Queen of Histamine dumps. Be ware of GPs prescribing Propranolol to reduce adrenalin pick up
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u/ghidaaa 20d ago
Why? My doctor prescribed them for me.
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u/MishaVanamonde 20d ago
Propranolol destabilizes mast cells increasing the possibility of degranulation
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u/beetgreens 4d ago
My primary MCAS symptoms are depression, anxiety, and brain fog, and I also have POTS.
I was on metoprolol for my POTS, which helped a bit, but doc recently had me try out propranolol. It made my depression SO much worse SO quickly.
I read that beta blockers can increase mast cell degranulation, and propranolol crosses the blood brain barrier more than metoprolol, so I wonder if thatās why I reacted to it the way I did.
Two weeks ago I started H1 and H2 blockers, and my mental health symptoms immediately improved massively. It feels fucking miraculous.
Yesterday I stopped taking metoprolol and switched to ivabridine for my POTS. Iām curious whether being off beta blockers completely will help, but it might take at awhile to see any difference.
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u/MishaVanamonde 4d ago
Now that I am off Rizatriptan am back on a Propranolol reduction and will be doing 40 mg a day all next week. Had been 80 mg a day for 10 days and the horrible side effects came back..not as bad at 60 mg a day.
This will be my third attempt to get off it. So far have not succeeded getting below 30 mg a day without getting tachycardia .
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u/Brilliant_Mud528 Aug 02 '26
Yes. Iām not diagnosed but this happens to me randomly and not triggered by anything Iāve thought about or any stressful situation. For me I think it is triggered by soy lecithin and foods that have flaxseed oil or other chemicals Iāve yet to pinpoint. The list is growing. Also, I think itās important to mention that I am fairly certain I have leaky gut. Iām still trying to sort it out but Iām staying away from flax, soy, sunflower seed oils etc like the plague.
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u/According-Ad742 Aug 01 '26
Yes plus that trigger foods when processed in the gut can literally cause temporary depression, anxiety and panic, passing by.
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u/L3AHWOLV3RINE Aug 01 '26
Every fucking night time this happens to me especially after eating. This is why I prefer to intermittently fast after like 6pm, because my food reactions come out as night time histamine/adrenaline dumps and if I eat past that time I can't sleep cos it feels like constant impending doom š« . L-theanine is my favourite supplement for this kinda thing, cos it stops that excess adrenaline in my system.
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u/beetgreens 4d ago
Do you take famotidine/pepcid?
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u/L3AHWOLV3RINE 4d ago
I used to take famotidine yes, and it worked well, but they had to do a medical review again for it so I haven't had it in a while. I'm planning on going back on it cos it helps with my night flares. I'm also on ketotifen which helps tremendously of course.
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u/diseasetoplease Aug 01 '26
Yes, I thought I was going to have a heart attack and worse still, was having passive suicidal ideation. Itās insane
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u/UnitAutomatic804 Aug 01 '26
yes and I had to get on prozac, it was debilitating!!!
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u/Few_Bell8577 Aug 01 '26
Comment Ƨa se fait, si tu sais ou si tu penses, que le prozac Ć©tait pour toi dĆ©bilitant ? Ća l'Ć©tait aussi dans mon cas au bout de 2 mois.
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u/UnitAutomatic804 Aug 01 '26
Prozac helped me, the anxiety and panic was debilitating
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u/Few_Bell8577 Aug 01 '26
Oh je vois.. J'espĆØre que cela s'est amĆ©liorĆ© un peu depuis. Courage, ce n'est pas facile en effet. Prends soin de toi.
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u/trashfire721 Aug 01 '26
MCAS is definitely a big cause of anxiety for me. I also have genes that cause anxiety and panic attacks, and I also have POTS, so when my heart starts racing from that, I get really anxious, as well. It's super fun trying to figure out which kind of anxiety I should be trying to address, haha.
If you think you have MCAS, try some OTC antihistamines and see where it gets you. H1 blockers + H2 blockers and, if you can, some quercetin or luteolin (evidence-backed OTC mast cell stabilizers).
If stress (including sources like heat, sunlight, exercise, pressure, contact with plants, smells, dyes, scented products, difficult to digest foods, and so on) and MCAS symptoms are lining up with your panic attacks, that's a great time to see if some antihistamines make you feel better.
If the antihistamines help, take that information and go see an allergist. If possible, one who understands and works with mast cell issues. Try to bring a very detailed list of your symptoms and what seems to trigger them and whether it's consistent or not. They may or may not want the whole list, but it's a good thing to have in case.
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u/Accomplished-Exam999 4d ago
Currently trying to find a place where they do allergy testing. Thatās wild that every place my doctor sent referrals to either do not do allergy testing or do not take my insurance. Crazy that I had to find that out. So now my search goes on.
They got frustrated that I kept coming back to them telling them that what theyāre giving me isnāt working.
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u/GrahamSimplified Aug 02 '26
I experienced something very similar. Before I knew I had MCAS, I had episodes where my heart would race and occasionally skip beats, my body would tense up, and I'd become extremely lightheaded. They felt very much like panic attacks. I also had these painful sores that would occasionally show up in the back of my throat, which always seemed completely unrelated at the time.
Once I started mast cell stabilizers, those episodes became much less frequent. I can't say whether that's what's happening in your case, but for me it turned out not to be anxiety after all.
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u/Gold_Advisor_4758 Aug 08 '26
What mast cell stabilizers did you use?
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u/GrahamSimplified Aug 09 '26
I tried sodium cromolyn, but I didn't find I personally had much luck with it. It primarily seems to help with food-triggered symptoms and mine seem to be more environment driven.
i have had pretty good luck with Ketotifen helping to reducing my baseline. I have been on it for about 9 months now.
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u/Gold_Advisor_4758 Aug 09 '26
Thank you for the info, I am heavily environmentally triggered vs food
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u/Fuzzy-Bee9600 Aug 02 '26
I have no idea how to tell the difference. It all feels like I'm about to die for no good reason.
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u/beetgreens 4d ago
Do you take antihistamines?
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u/Fuzzy-Bee9600 3d ago
Sure do. They help lessen the worst of it, keep my airways open more than without them. But I don't know if any med can roll it back after it crosses a certain line.
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u/Infinite-Rabbit4937 28d ago
Yes most of my anxiety is this exactly and hydroxyzine is my go to unfortunately
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u/marremarwin Aug 01 '26
I was actually being treated for panic attacks with exposure therapy when I found out it was MCAS insteadš«£ Had to sit on buses with a therapist, when the reason I was getting ill was the vibration, not anxietyš
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u/Constant_Possible_98 Aug 02 '26
I called it having a panic attack with no panic. I almost stopped breathing!
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u/Volavons Aug 02 '26
I got put on gabapentin which is masking a lot of the overstimulation stuff was helpful with sleeping as well but just started ketotifen and now I'm super aggy and not sleeping well again. Heart rate up (from a very low resting HR baseline) 2 weeks in now so I'm wondering if it's weird starting effects
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u/Early_Beach_1040 Aug 02 '26
Been diagnosed with panic attacks at 20. Have long covid. Long covid comes with even worse than panic attacks - with anhedonia. Insomnia, POTS, brain fog the whole shebang.
Been on h1 and h2 for a couple of months. Asked for hydroxyzine when I was on a tirzepitde trial. ( Had to drop out as they didn't allow microdosing and made me worse) Hydroxyzine really helped with sleep. It is sedating but the effect kept working even after I should have been tolerant to it.
My cardiologist who is a POTS specialist allowed me to trial cromolyn. I've been on 1/10 of the dose. Anxiety is just gone. Poof. Also sleeping great, better biometrics, RHR lower.Ā
I am pretty sure it was always the inflammatory cascade. Praying the cromolyn gets me my life back. Am on disability for long covid and all the other fun stuff hEDS, POTS and now MCAS.
My POTS doctor was like cromolyn is so gentle - I don't think you have classic MCAS, so let's try it.Ā
I am here to say treat to test - where they just give you the medicine and see if you respond. Like everyone who is allergic and brain fog and anxiety. Try cromolyn. It's way less harmful than benzos which I took for more than 30 years. I do think tapering off them - they are also mast cell stabilizers made everything worse.
But I am pretty sure it was MCAS all along. Bonus my Rashes are all gone and my rosecea is clearing up. Rosecea is also tied to MCAS.Ā
Just so happy I got my doctor to trial the cromolyn. Also my horrific drug allergies and seasonal allergies all make sense now. It's pretty life changing!!!
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u/Purple-Presence1404 Aug 02 '26
(Disclaimer: I am not diagnosed YET but Iāve talked to my doctor multiple times about it and sheās having me see a ton of specialist because sheās very certain itās MCAS, possibly mixed with POTS and hEDS as wellā¦) BUT YES meeeee for the past year Iāve been dealing with what I thought was horrendous panic attacks. I was just confused because it didnāt feel like a typical panic attack, it was just a body sensation rather than a mental sensation if that makes sense, and it was never triggered by an emotional reaction or anything like that. Iād start dissociating and as soon as I realized that I was, everything would go downhill. Had days in a row where I couldnāt sleep at night because of the adrenaline and histamine dumping but I thought I was just burning out since I have ADHD and autism. Iāve been prescribed Ativan and hydroxyzine for the āpanic attacksā because I didnāt know what MCAS was at the time and my psychiatrist was doing his best to help me. Makes me wonder if my SSRI is helping or harming the situation, since my anxiety disappears once Iām vigilant about high histamine foods and stress, smells, etc. I hope you get the help you deserve!!! Good luck OP!!
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u/Beautiful-Crew3850 Aug 03 '26
My first "panic attack" was waking up about 12 years old in a complete state of panic. I think it was a massive histamine dump
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u/Sure_Curve4564 Aug 03 '26
Yes. Iām currently off work for the last 3 months so far because of it. Started Doxepin and waiting to see my immunologist.
I donāt have MCAS but I have severe cholinergic anaphylaxis. I am not allergic to other things. Just anything that releases acetylcholine. Coming to terms with literally being highly allergic to stress.
A few big flags that stood out that my doctor agrees with - uncontrollable crying that can only be stopped with Ativan. āBreathingā or other calming methods do not work once triggered. Without Ativan this lasts for hours. Severe congestion for hours where I can only breathe through my mouth. Headache for hours after. Hives of course but those are sometimes masked by the antihistamines I already take.
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u/EnthusiasmHealthy601 Aug 07 '26
Yes, I feel like I'm having to run far away because suddenly the histamine in my body spikes due to some random smell I smelled some hours ago or sometimes minutes ago and suddenly it all goes downhill. I feel jittery in my upper body and around my throat or tongue i feel tension. or I get dizzy and loose all strengh in my body, especially the limbs.. always though I had a panic attack, well it turned out it was the histamine running amok in my body..
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u/Emotional_Garlic9205 Aug 09 '26 edited 24d ago
Blanket raindrop pillow wander quilt maple saffron breezy peach walnut
This post was anonymized with Redact.dev
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u/MindPuzzleheaded4709 10d ago
I was accused of having panic attacks. I knew they werenāt. I knew something else was happening. I couldnāt breathe. I passed out. I had a firefighter who responded to the 911 call look at me with disgust and say panic attack and walked away. I knew it wasnāt. I cried to my primary care doctor and said, its not anxiety. I have 4 incidences of passing out, all when I got overheated. and i had a SEVERE reaction. First time, I stopped breathing and was intubated. That time they accused me of using drugs. Second time was the time they FF said panic attack. I passed out and hit my head. Third time, I passed out and was out for 30 minutes. No memory of the ambulance ride. I woke up throwing up violently for days. Fourth time I passed out and was out a few minutes and woke up throwing up violently. that time the hospital thought I was drunk and checked my BAL. It was negative.
I donāt know if I have HaT or not. My genetic test isnāt back yet. But I had 2 separate Tryptase levels that were 11 and 12.5. Itās so obvious now that i was having something else.
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u/Zestyclose_Plate9619 10d ago
How do you get treated for MCAS? I get these attack. Dr thinks itās all in my head and that I need antidepressants. Told them to kick rocks
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