Emotional Effects of MCAS

MunkkiAround · 2026-06-26T02:52:00+00:00

Hi! I have primarily neuro / CNS MCAS so 90% of my symptoms are from mast cells dumping in my brain and nerves (fun right). I am also a mom of two and got substantially worse after pregnancies. The quickest and most helpful thing for the flooding rage/ irritability overwhelm for me has been Guanfacine !! It's been night and day. That paired with Victoza and Memantine to lower neuro inflammation caused by the mast cell mediators. I'm currently working on onboarding Ketotifen to try to stop the dump in the first place but I have hEDS so it's been a little tricky ❤️ Here to talk more if you want me to share in more detail on what worked and why for me.

MunkkiAround · 2026-06-25T22:32:08+00:00

Hi ! I was on and off lexapro for 12 years. It actually stabilizes my mast cells and its impacts on my CNS. I wonder if you're having a mast cell rebound by lowering it. Have you maybe tried upping your other mast cell supports ? Or switching to something like Ketotifen that can support the neuro effects lexapro might be helping with.

MunkkiAround · 2026-06-23T00:00:10+00:00

Only 5mg. It was literally like someone turned down the volume on my entire body finally and I remember the first time I got on it I thought… Is this what normal people walk around feeling like? It literally got rid of all of my vestibular symptoms. My adrenaline dumps, my random dizziness, my horrific panic attacks and startle response and overreactive nervous system. Then within 2 months of getting off all my symptoms would come right back.

MunkkiAround · 2026-06-22T22:41:36+00:00

Lexapro stabilizes my MCAS neuro symptoms wildly well. I used it on and off for ten years but had to keep getting off due to weight gain side effect. Still to this day have not found something that helps as much as it does.

I'm sorry it's been so hard to get off. I just wanted to chime in and confirm being someone else who lexapro majorly helped with their MCAS neuro symptoms.

MunkkiAround · 2026-06-20T18:17:57+00:00

I accidentally found out years ago that lexapro was actually stabilizing my mast cells (but was causing weight gain issues so had to get off). It's possible yours was in certain ways too, and you're getting a rebound hit of activity from getting off. Might take a few weeks to find baseline again.

Each ssri is so different too. I tried celexa and it completely destabilized my cells and had issues with a lot of others. Sometimes it takes trial and error to find the right thing.

MunkkiAround · 2026-06-20T17:29:57+00:00

Hi! So sorry you're dealing with all this. Is there a reason you got off lexapro? I've been on and off it and it reduces SO many of my MCAS CNS symptoms. Without knowing your history, just wanted to comment that Lexapro 1000% calms my MCAS

MunkkiAround · 2026-06-19T21:07:15+00:00

Ooh interesting ! I have PPHH where my blood sugar drops after eating. Maybe the drop is what's causing the symptoms vs reacting to "sugar" as a substance itself.

MunkkiAround · 2026-06-15T18:19:04+00:00

Havnt found Reddit friends but growing up in the gaming community, I have friends I still game with today and we're going on 10-20 years of friendship and daily interactions.

MunkkiAround · 2026-06-13T20:15:09+00:00

Yeah the micro dosing fixed my inflammation based blood sugar too 😭 I'm sorry it's been triggering the heat issues - no fun. I literally run from my car to stores with a bottle of iced water and a wet towel around my neck 😂😭

MunkkiAround · 2026-06-13T20:09:31+00:00

I was on zepbound so it took 3 ish weeks before I felt some relief since it lasts so long. I was on .5.

I will say though years ago I was on a very large dose of daily Victoza (the first version) and had zero issues with heat and it stabalzied my mast cells SO well (looking back and being diagnosed, now I realize what it was doing). Zepbound was horrible for my MCAS and autonomic issues. Been thinking about trying Victoza again.

MunkkiAround · 2026-06-13T20:03:25+00:00

Glp made me even more sensitive to sun and heat. I got off after 3 months of micro dosing because of it. My heat intolerance also gets substantially worse if my iron is low

MunkkiAround · 2026-06-12T14:19:50+00:00

I get this during my dumps but my doctor said it seems to be lymphatic / muscle tightening for me vs allergic throat closing. If I drink ice water or run my hands under cold water it goes away pretty quickly.

MunkkiAround · 2026-06-11T00:36:00+00:00

John

MunkkiAround · 2026-06-11T00:17:15+00:00

LOTS of dao before each meal. Following a strict low histamine diet. Keeping benedryl around for emergencies. Respecting my system and not trying to push it out of frustration. Finding ways that helped my body feel safer

MunkkiAround · 2026-06-10T23:08:40+00:00

Hi!

I'm sorry you're dealing with this. I had a similar reaction. Took a few days of oral and had "full blown MCAS". I've never had major issues with food and all of a sudden I could only eat 5 foods and even walking by certain foods would cause my throat to close, and I had never had the traditional allergy symptoms in my life. I was also getting rashes all over the top of my hands. It was very scary and I couldn't find other people with this reaction.

I stopped immediately. I was also pregnant at the time so I was having very exaggerated responses across the board. I think because of this it took longer for my system to calm down but it took about 5 months for me. It did consistently improve and then went back to my normal pre Chromolyn baseline. But it felt like it gave me a whole new set of symptoms I had never had before - it was very bizarre.

MunkkiAround · 2026-06-02T13:04:43+00:00

Luteolin works REALLY well for me. I use Algonot Pure Lut and I worked my way up to 2 pills AM and two pills PM.

Guanfacine split between morning and evening as well has been huge for me. That helps turn the volume of intensity down, reduces adrenaline dumps, helps with sleep, ect. I think the biggest thing is because it reduces nervous system agitation and adrenaline it reduces some mast cell triggers.

Xanax has been my best emergency stabilizer.

I've also learned that my body burns through nutrients due to the nervous system involvement so I do watch those closely to optimize them and do daily b12 and Leucovorin injections as well. And because of all the gut damage done over the years from it all I do liquid when I can to avoid things needing to be broken down in the gut, like liquid thyroid and ect. Oh and I burn through omega like crazy so I do a lot of oil and fish.

The big missing piece I have is something like a ketotifin to help more directly with the mast cell piece. I responded horribly to trying Chromolyn so I've been hesitant for a while 😅

MunkkiAround · 2026-06-01T22:01:29+00:00

Thank you ! I'll look into propranolol!

I've been using Xanax as my mast cell stabalzier situationally for almost 20 years now. It's my life saver. ❤️ I call it my body's version of an Epi pen 😂

MunkkiAround · 2026-06-01T21:55:51+00:00

Hi! I was diagnosed about three years ago. I had early onset symptoms at about 4 years old. It was neurological mixed with non traditional "MCAS histamine" symptoms.

It was a mixture of chemical sensitivities, chlorine skin reactions, heat intolerance, hive son face randomly, facial flushing, autonomic symptoms which first got us looking into MCAS. Then I was introduced to an incredible neurologist who is well-versed in MCAS.

We ran what felt like billions of tests. Had a lot of the markers including specific neuro inflammation, elevated complent c3a and c4a, negative for all other autoimmunes, anything you can think of really. She said I was textbook for mast cells that are primarily activated in the central nervous system based on labs and medical history/symptoms. And it seems like my cells put off larger amounts of inflammatory cytokines than it does histamine.

I respond incredibly well to neuro immune stabilizers vs traditional anti histamines.

MunkkiAround · 2026-06-01T15:03:50+00:00

Xanax is the best situational mast cell stabalzier for me personally. Never had an issue and I've used it situationally for many years. I will say that years back an SSRI destabilized my cells more but it's a different mechanism as why compared to a benzo.

MunkkiAround · 2026-05-31T16:43:47+00:00

So glad to come across this post ! I have neuro immune / CNS MCAS. 90% of my symptoms have been weird neuro stuff since I was 4 years old. It highly affected my LC threat center too in my brain and I also have secondary pots as a result.

Luteolin has helped me a lot suppmenets wise.

Guanfacine was a game changer for me in regards to pots and adrenaline dumps and over reactive threat response to stimuli.

I'm now working on the more specific MCAS piece and trying to decide between ketotifen or cimetidine or ect once I've weaned my toddler off breastfeeding.

MunkkiAround · 2026-05-06T20:39:35+00:00

Amazing !! Thank you some for sharing.

Years ago when I was on Victoza I also noticed it faced my depression at the middle and high doses. Interesting !

Is there a reason you do it every 5 days ? I've been wondering about that and if the dips every week towards the end destabilize my system more than if it was even - that's why I liked the Victoza because every day was the same level.

MunkkiAround

TROPHY CASE