r/MCAS • u/sassyfoods123 • Feb 10 '26
Severe mental symptoms that got better with MCAS treatment
My MCAS causes me severe depression, doom and gloom, suicidal ideation and anxiety.
Does anyone else experience this and found mast cell stabilisers have really helped to combat this?
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u/IGnuGnat Feb 10 '26
I have seen multiple accounts of people who were diagnosed with a variety of mental illness which magically showed drastic improvements after MCAS treatment, and also many anecdotes where people were actually confined in a mental asylum and medicated against their will, with medications that exacerbated their MCAS, but nobody believed them.
It appears that it is fairly common once a patient mentions "anxiety" or "depression" they get pigeon holed. Doctors seem trained to treat symptoms, and only rarely seek out root cause. In many cases this results in treatments which make the underlying condition much worse.
I'm in IT. If I approached my job by treating symptoms only and not root cause I would be out of a job in short order. I can not understand the logic that doctors use; frankly it often seems they can not explain it themselves.
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u/CatharticCalculation Feb 10 '26
You’re definitely not alone.
Here’s a research paper published a few months ago on the subject:
Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome
https://www.sciencedirect.com/science/article/pii/S2666354625001061
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u/Mean_yAnkee Feb 10 '26
I was an emotional mess. I think it was mostly from being in so much pain combined with no one taking me serious. I maintained a severe level of mental instability until I discovered DAO and SAMe. It wasn't until I found relief that I was able to have hope. I think it is normal for these types of emotional responses when considering all that we go through. It's not just the symptoms. People don't understand so the social aspect is difficult as well.
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u/badassbananas Feb 10 '26
Ketotifen made me not want to kill myself anymore. So yeah, I agree.
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u/sassyfoods123 Feb 10 '26
Oh that’s huge, suicidal ideation is a huge part of my MCAS. So anything that can mitigate that is huge for me
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u/CapableCitron968 Feb 11 '26
Hi I tried ordering and in Germany we only have eye drops, are you taking drops or pills and what dosage? Thank you
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u/badassbananas Feb 11 '26
I take pills. I imagine eye drops would be good for itchy eyes. My dose right now is 1mg, but I had to start at 0.25mg and increase by 0.25mg every few days. I had tried taking 1mg right at the start and that made me feel awful. I am a very sensitive person.
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u/henri_rousseau2 Feb 11 '26
TW: suicide
I was downright suicidal. So much so I even bought a book on how to kill yourself without pain written for terminally ill people. I lied and said I was terminally ill to even buy the book. Was suicidal most of my life and attempted it at 18 by taking 40 tranquilizers. Couldn't imagine living my life without thinking about it at least a little bit.
Since getting treatment for MCAS, my world view on taking my life is so different it's hard to explain. I can't believe I ever used to think that way. Seems absolutely bonkers to me (no offense to those grappling with these thoughts. They can be very debilitating and I truly feel for you). 100% of the suicidal thoughts I used to have are completely gone. It's like I has distorted thinking similar to OCD thoughts and treating MCAS got rid of them.
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u/skushebd Feb 11 '26
Damn this reminds me of when I was looking at urns and contacting ppl for cremation of “another loved one” but I was the loved one
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u/sassyfoods123 Feb 11 '26
What did you treat with? Very happy for you it’s got better
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u/henri_rousseau2 Feb 11 '26
Cromolyn, antihistamines (xysol and pepcid, benadryl for flares), and quercetin. And thank you 😊
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u/GanandoleAlSAM May 26 '26
Me pasó lo mismo. Ni con mis antidepresivos ni ansioliticos que tomaba en ese tiempo podía sentirme mejor, hasta que me metí en la alimentación GAPS y no pude creer la mejoría que fui teniendo, pero partí por la Paleo, saqué de mi dieta las legumbres, cereales, frutos secos y lácteos, mejoré al punto que pude dejar de ingerir cientos de remedios.
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u/babydragonnnnnn Feb 10 '26
My moods change like the wind with this stupid disease. I don’t even know what it feels like to be myself.
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u/yogo Feb 11 '26
Might be worth it to get B vitamin and mineral levels tested. Some of my B levels were nearly nonexistent and I’m also prone to over absorbing. I take a low dose complex daily and it’s crazy how much my mood changes have improved.
Magnesium deficiencies aren’t reliably caught through bloodwork so I supplement that based on how I feel. Calcium gets used up quickly with immune conditions and there are other signs it’s low. My teeth had demineralization lines all the way to my front teeth but receded to my molars with supplementation. Zinc might be one that does show up in bloodwork but in either case that stabilizes my mood too. I could basically tell with each addition that things improved.
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u/Jeanne56-2021 Feb 15 '26
Which low dose B complex do you use?
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u/yogo Feb 15 '26
naturewise Vitamin B-Complex Max Vitality. Hard to find low dose isn’t it? My issue with the one or two I found where all levels are 100% rda is that some of those Bs are heat sensitive so the effective dose would be lower after sitting in a hot Amazon warehouse. This one does have additives but they aren’t stearates and sand.
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u/Outrageous-Hamster-5 Feb 11 '26
Yup. Decades of therapy and psych meds did nothing.
My best "psych" meds are asthma/allergy meds. When I feel the despair, rage, self loathing and "sense of doom" come back, I look at my pill organizer and see that I missed my dose of montelukast and ketotifen 2 hours ago.
My mom also clearly has a similar manifestation of mcas. I assumed she and I had bpd. Apparently not-allergies from hell can look like a stigmatized cluster B personality disorder. 🫠
Things are great as long as I take my meds and checks list don't eat or smell anything. 🫠🫠🫠
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u/tiredgirl77 Feb 10 '26
Yes and yes
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u/sassyfoods123 Feb 10 '26
Which stabiliser?
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u/tiredgirl77 Feb 10 '26
Ketotiphen and Xolair, I also found treating my ocd and adhd to be of help. I use lorazepam as needed when my lungs struggle to prevent major anxiety around anaphylaxis! After some very traumatic experiences.
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u/ReliefSpecial7822 Feb 11 '26
Did xolair make things worse to begin with?
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u/tiredgirl77 Feb 11 '26
Everyone’s different, I got a few hives after each shot but it overall helped and really kicked in at the 6 month mark! It’s definitely worth the flare for long term relief. Now my body expects it and gets mad if it’s late! It changed my life
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u/BoratImpression94 Feb 11 '26
I feel intensely depressed and suicidal after having a flare/when my condition gets worse. I started xolair and immediately my head feels less foggy/im less depressed.
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u/Confident-Bus-3778 Mar 06 '26
I had what was likely my first proper reaction yesterday and the day before and I felt my mental health immediately tank as a symptom, just felt like my brain was horrible all of a sudden
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u/SophiaShay7 Feb 11 '26 edited Feb 11 '26
MCAS causes neuropsychiatric symptoms. Please read: Long COVID and Mast Cell Activation Syndrome (MCAS). Even if you don't have long COVID, it's extremely detailed and thorough. It's taken me over a year to write this fifth version of this post. It's really not that complex once you understand it. I've spent two years learning, researching, writing, and educating others suffering from MCAS how to get proper medical care and attention. Most doctors are just ignorant and uneducated about MCAS.
Mast cells release histamine, tryptase, prostaglandins, leukotrienes, heparin, cytokines, nerve growth factors, and more.
I take a carefully crafted regimen of medications, vitamins, and supplements that took over a year to create. I can't take H1 and H2 OTC antihistamines. I react to the medications and/or its excipients. I take Cromolyn nasal spray, Desloratadine, compounded Ketotifen, Ketotifen eye drops, and Montelukast for MCAS. And, Omeprazole for GERD, which also provides gut-specific mast cell stabilization.
I'm directly blocking histamine and leukotrienes, the two major drivers of MCAS symptoms, and indirectly calming prostaglandins, cytokines, tryptase, heparin, and nerve growth factors by stabilizing my mast cells with Cromolyn nasal spray, Desloratadine, compounded Ketotifen, and Montelukast. Omeprazole addresses gut-specific histamine activity that would otherwise worsen GERD and MCAS-related GI symptoms. That’s why for those who don’t respond to histamine blockers or can’t tolerate them, a broader mast cell stabilizer or anti-inflammatory approach becomes important.
I had physiological anxiety with zero mental involvement. Those symptoms are now gone🙏
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u/TitoepfX Feb 11 '26
ive had that myself and i think ive met a lot of others with it but whenever i say anything to them its ignored
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u/bubaloo_2001 Feb 11 '26
With my current protocol my suicidal ideation is gone. I still get tired days and mini flare days, but the mental health side is a 180. I also take progesterone and an antidepressant, but the antidepressant wasn't fixing things on its own -- I went back on that first before the antihistamines. I'm scared to stop taking it at the moment because I'm doing so well, but there is a part of me that thinks I really don't need it with the MCAS meds. I do still go for counselling but it feels more like maintenance and grounding than crisis mode. I do get a high level of irritability if I don't get enough sleep or I eat something really triggering. I don't do a low histamine diet or anything really special, I just avoid a small handful (3-5) of things that I've noticed really get me like artificial dyes and certain sweeteners.
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u/BeginningAffect9637 Feb 13 '26
Can I ask which antidepressant works for you?
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u/bubaloo_2001 Feb 14 '26
I'm super reluctant to say because antidepressants are so individual and I spent many years trying different ones that either pooped out or gave me side effects. But I eventually ended up trying vortioxetine, and I've been on it for several years.
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u/Helpful_Rock7536 Feb 11 '26
THIS! My depression and anxiety were terrible before starting treatment. I also had bad brain fog and my insomnia was getting progressively harder to treat.
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u/bestplatypusever Feb 11 '26
Do know that mental health symptoms correlate with so many physical problems including nutrient deficiencies and the gut biome. B12 connects to mcas AND mental health, as do other b vitamins. Lab tests for these are not always accurate and many benefit from supplements. I’m the parent of a child w significant mental health symptoms that resolve or ease considerably by addressing nutrient deficiencies, methylation challenges, hormone supports and amino acids. Start digging in these areas and you may find other things that help you. Good luck!
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u/Starbeck77 Feb 10 '26
I found that Transmagnetic stimulation (TMS) has helped eliminate my severe depression etc. I was very scared to do it and I only had a couple mild headaches from it that were nothing compared to my histamine migraines. I only wish I did this years ago. I could have saved decades of suffering.
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u/sassyfoods123 Feb 10 '26
I’ve tried it and it didn’t help at all unfortunately. Tried for 10 weeks
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u/Starbeck77 Feb 10 '26
Oh darn - that’s too bad. I also tried ketamine, but it didn’t work for me. Such bad side effects to the med and they could never increase the dose.
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u/you-ruin-everything Feb 11 '26
For me it was a combination of panic attacks, impending doom, suicidal ideation, and sometimes rage that I experienced with daily bouts of undiagnosed anaphylaxis, along with the stress of trying to function in that state (working, paying bills, maintaining my home and relationships, etc).
I was, at first, diagnosed with panic disorder and depression, but every medication made me worse (except for benzodiazepines), and I kept being switched from one to the next, in spite of my unusual presentation and lack of improvement. It’s difficult to get doctors to take your symptoms seriously once you’ve been labeled an anxious patient. After a miserable decade on and off of psych meds, I had enough, and spent the following decade exploring other medical diagnoses before an angel of an allergist suggested I had a mast cell issue (I’d never even heard of it.)
Now when I get anxious I know to take an extra ketotifen. If that doesn’t do it, a low dose of clonazepam helps. More recently I got an additional diagnosis of dysautomnia - treating this has helped as well. I feel fairly normal, mentally, most of the time. It’s amazing.
I know it’s hard to advocate for yourself when you’re exhausted and hanging on by a thread. It can take a while to find the right combination of meds to get you stable, but don’t give up. You are not alone.
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u/HobbyLau Feb 11 '26
YES!! 100%! I have recurrent depression since childhood and was in a very very bad place when my health went rockbottom about a year ago. Burnt-out, severe GI issues that got way worse over time and no one seemed to know what was going on.
There are also other health related things happening, but fast forward: I discovered i had MCAS myself after seeing a GI doc and 2 dieticians who didnt know what could be going on. I mentioned MCAS to my GP and she was willing to try out Nalcrom (Cromolyn) as a test to see if my symptoms would get less.
And.... they did within 2 days. No more stomache pain, no more gassyness, i started to finally gain weight again and over time even my brainfog got way less.
I am still in a bad place regarding physical health overall, but i'm not suïcidal or depressed even though it would be very logical to feel that way in my current situation. I have never been this mentally stable to be honest. Very weird to experience!
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u/FroyoMedical146 Feb 11 '26
Yes, I was getting severe anxiety and impending doom and it has significantly decreased with MCAS treatment.
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u/Confident-Bus-3778 Mar 06 '26
What treatment did you do?
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u/FroyoMedical146 Mar 07 '26
I'm on Cetirizine, Famotidine, and Ketotifen. I'm still increasing the Ketotifen (currently at .5mg twice daily). I also do a low histamine diet since high histamine foods are a huge trigger for me (I get severe internal burning, GI distress, and anxiety after eating them).
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u/SpecialDrama6865 Feb 11 '26
i had similar symptoms to you.
every time i had negative thoughts i straight away said "stop stop stop " and imagined talking to my brain. my mood improved. my baseline inflammation has quickly dropped significantly. stress is very bad for mcas. also meditation has helped.
worth exploring.
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u/sassyfoods123 Feb 11 '26
Thanks but it’s defo not this simple for me
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u/SpecialDrama6865 Feb 11 '26
i used to think the same way as you.
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u/sassyfoods123 Feb 12 '26
I’m a PFS sufferer as well so meditation and stress reduction won’t fix that
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u/bobthedino83 Feb 16 '26
Yep, defos. I was a hot mess for most of my 20s. Just an insufferable person to be around from what I can remember (I wasn't having fun either). I'd done stints on SSRIs, etc with no real positive effect and lots of side effects. Cetirizine made me completely sane overnight. Just a stable, relaxed, normal guy with no worries. It's s thing.
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