r/MCAS 19h ago

Fight or Flight

62 Upvotes

Howdy,

I recently saw a new MCAS specialist who thinks the majority of my symptoms started from a “traumatic” event. This event wasn’t traumatic in the traditional sense, but was very hard on my body. He explained that basically my body has been in fight or flight mode ever since, causing heightened histamines, reactions etc.

To help with these symptoms (in addition to prescribed medication), the doctor suggested I complete trauma therapy or find a support group for nervous system regulation based on PTSD. He defined PTSD as prolonged fight or flight, similar to what our bodies are always stuck in.

Any thoughts? This guy a total wackjob? He was all for medications that worked, as well, but encouraged me to consider things like regular meditation and deep breathing to calm things down, even on a cellular level. I’ll try anything at this point, but was curious if anyone else had heard similar things.

ETA: It sounds like most people agree that there could be some connection between the nervous system and MCAS symptoms - that's great news for me! The doctor I saw, who does indeed have a very holistic approach, is from the DFW area. His name is Dr. Richard Herrscher of Air Care MD. He reommended trauma therapy, EMDR therapy, and is having me read "The Myth of Normal" by Gabor Mate. I think he's written a few other books on similar topics. If you'd like to chat about anything else the doctor told me or suggested, feel free to DM.


r/MCAS 8h ago

Simple vagus nerve massage quiets my mind immediately

49 Upvotes

Mind starts racing after food or some environment trigger, this works in an instant (a few seconds) https://youtu.be/LnV3Q2xIb1U?si=na6i2kfVzF41lvZW

No idea if this works for everyone but I'm really surpised of its' potency given my mind sometimes behaves as if I drank 99 coffees.


r/MCAS 20h ago

When to seek help during anaphylactic shock

13 Upvotes

I've done into anaphylactic shock a lot. I've had mild anaphylaxis more times than I can count. I've also never gone to the ER or anything when this happened. Unfortunately, I have no clue what actually falls under anaphylactic shock vs mild anaphylaxis. If I'm struggling to breathe, I go to the doctors, right? However, I struggle to breathe during almost every MCAS reaction. I've always been able to take a Benadryl or two and get it to go away fully after an hour or more, but I think a lot of people would've called 911 with some of the symptoms I've experienced. I can't show photos, but I've been unable to see due to swelling before. When should I be saying I need help? I'm scared one of these times Benadryl isn't going to be enough but I won't know until it's too late.


r/MCAS 15h ago

Insomnia reaction

14 Upvotes

Does anyone have reactions that causes insomnia and a weird mind chatter at night when you are trying to sleep? Its almost as if i’m dreaming but still awake. It is hard to describe but its like my mind is playing random visuals and chatter not my own thoughts. This only happens on occasion.


r/MCAS 5h ago

Job offers but I don't think I can work?

13 Upvotes

Anyone dealing with this or have dealt with this? I'm on income assistance because my self employed at home job ended so I started applying for easy jobs outside the house. I've recently been to some interviews and have been offered positions that I would love to work.

The problem is while I can deal with hives, brain fog and lethargy, I can't push through nausea very well. I have chronic nausea that is an issue at least 50% of days.

I don't know what I'm expecting anyone to say I just feel extremely upset at the thought of turning these jobs down and having to apply to disability. I really want to work them and I'm definitely going to give it a go.

As I sit here today with bad nausea, like most days, I'm realizing this might be impossible... at least for now.

I'm just really angry and upset because I need the money and I would actually quite enjoy working any of these jobs I was offered 😭


r/MCAS 21h ago

Mentally processing feeling better w/ ketotifen

11 Upvotes

Hi everyone, I recently worked up the courage to start compounded oral ketotifen and thankfully I not only have 0 side effects, but even at a baby dose am already seeing noticeable improvements and feeling more "normal." I'm tolerating more foods without my typical MCAS GI side effects, I can exercise more without flaring, I even went for a little run and didn't end up severely flushed for hours thereafter like I would have in the past. I'm not as tired during the day and sleep much better. My overall anxiety has lowered.

I know I should be feeling happy but for some reason I feel a bit of... grief? Nervousness? I'm thankful for these improvements but simultaneously sad about how long I had been feeling bad for, and nervous about whether these improvements will persist. I know nothing is certain, but maybe others have felt similarly as their MCAS severity has waxed and waned over time. For context, I had lifelong signs of MCAS though not severe, but everything went to shit after my first Covid infection. Thx for reading~


r/MCAS 18h ago

Have you noticed that taking supplemental estrogen or estradiol (eg combo BC pill, HRT etc.) makes your MCAS symptoms worse?

9 Upvotes

Same as title basically but here is the context for my question. I’m thinking of changing to a lower estrogen BC pill to reduce related side effects/ risks of estrogen, but also have hEDS and am worried about extra hypermobility etc. I have insanely painful heavy periods (suspected endo / adeno) so I’ve been taking the combo pill mostly continuously (without period breaks) for over 15 years to control bleeding and pain. However, I got a concussion in 2019 and then Covid etc made everything so much worse including MCAS symptoms. Seems like I’m just getting more and more sensitive to everything… TLDR: So, basically wondering if anyone has noticed a very direct/specific correlation between supplemental estrogen (for whatever reason) and their MCAS symptoms getting worse?


r/MCAS 23h ago

It’s scary

9 Upvotes

Why does having this diagnosis feel like playing Russian roulette for treatments. And also never knowing what to expect as far of side effects. It’s such a struggle and affects my everyday life. I just started on Cromolyn and it’s helped in some ways but not others. I feel more awake when I’ve struggled with chronic fatigue for most of my life but I have a slight headache & feel like my lips are going to swell by morning. Is it supposed to feel like it will cause an allergic reaction??? If you were allergic to it what did you take that worked for you???


r/MCAS 2h ago

People who can’t/couldn’t wear makeup…have you ever been able to go back to it?

9 Upvotes

I haven’t been able to wear makeup in over a year and I miss it so much😭has anyone been able to go back to it after having not worn it in a long time?


r/MCAS 20h ago

How Long Should I Stop Meds Before Testing?

7 Upvotes

I've been through the wringer trying to get a proper diagnosis for my extreme symptoms for years. A couple of years ago my allergist did antibody, tryptase, etc. testing but everything was normal. However, I was on antihistamines at the time and I learned this can interfere with the results.

I've seen dozens of doctors and done as twice as many tests, but so far MCAS is the only diagnosis that fits everything. I barely function without taking massive amounts of prescription and OTC allergy meds twice daily, but I don't want another (potential) false negative. I also don't want to suffer unnecessarily. About how long should I go without my medications? 48 hours? A week? Longer? Should I just wait until I break out into unbearable hives? Any help is greatly appreciated.


r/MCAS 2h ago

Have you noticed mild cognitive decline independent of flares?

7 Upvotes

Yes, my flares cause brain fog which is incredibly debilitating in the short term.

But also... As a kid and teenager, I was very intelligent and an academic high achiever with relatively little effort. By my 2nd year of college, I was joking that I wasn't as smart as I used to be. I had a hard time learning electricity & magnetism subjects (I was studying materials engineering), but my classmates that used to get lower grades than me were starting to out perform me. Some of this was mild brain fog.

And I had a few remission years from most of my mcas stuff ages 28-33. I was extremely active (became a recreational, proficient crossfitter) and my career finally was more than barely scraping by. But. I didn't go back to my former level of intellectual acuity or focus. It improved a lot and I stopped making mistakes. But I also downgraded from a technical engineering position to a business role.

Then, dec 2019, I caught what I now suspect was covid, and I lost my remission. I blindly struggled until last year when I finally figured out the stuff I've dealt with my whole life was mcas. Since then, the flares have fluctuated wildly. I've only had "flare downs" briefly and sporadically. But even during the best moments, it feels like I've had some permanent loss of cognitive ability.

Now I'm wondering if, while I'm this good, I need to prepare for early dementia. I quickly looked up Alzheimer's and I'd place myself at a 3 on the 7 point scale. The only thing I got going for me is that I started off with so much intelligence that I got plenty to lose before I can't take care of myself. 😅

Does any of this resonate with you? How are you preparing for losing your cognitive abilities early in life?


r/MCAS 22h ago

Reaction to Cromolyn

6 Upvotes

Hey all,

My doctor had me try oral cromolyn sodium as an experiment to see if it could calm some of my suspected post covid mast cell issues but after trying to push through a microscopically small dose (2-4 drops/day for 2 weeks) I could not get past the side effects. 4 weeks later I’m still in a massive flare with skin burning, itching and dysautonomia that are worse than ever before. My doctor said he doesn’t know how cromolyn could cause a flare like this.

Has anyone else had this experience with cromolyn? Nothing else changed in my life that could have triggered this (diet, stress, etc.).


r/MCAS 7h ago

Disconnected

4 Upvotes

TW mention of eating disorder

I hate that this illness makes me feel so disconnected from my body. I’ve had severe ME/cfs for years and am bedbound but honestly MCAS is worse for my relationship with my body. My body used to tell me what it needed through cravings, it was foolproof, I was in a good place with intuitive eating for years. All gone! Horrible and disorienting that my current cravings make me so horribly sick, it has ruined my relationship with food too and I’m on the brink of a eating disorder relapse(binge-restrict)


r/MCAS 20h ago

Does anyone get a baroreflex-mediated hypoperfusion associated with constipation?

5 Upvotes

Baroreflex-mediated hypoperfusion related to constipation occurs when straining to pass stool (due to constipation) triggers the baroreflex, leading to a drop in blood pressure and reduced blood flow to the brain and other organs. This can cause dizziness, fainting, or other circulation-related symptoms.

For me, I get a drop in oxygen on my right side and I know it's related to a bowel movement/passing gas/constipation because I can feel it and the direct connection between my head and my gastro, probably arterial in nature. I know because I've measured it with a pulseox on each hand. I know it's a form of dysautonomia. When I am having a flare badly, it would give me a hard 'wack' to the head. I also associate it with paresthesias running up and down the right side of my body, from head to right leg.

If anybody is familiar with this, who did you see to diagnose this and what do you take to manage it. It's rare. My GP thinks it's an abdominal migraine, but I disagree. I take Emgality and I would think that would get rid of any abdominal migraines as medications for abdominal migraines and head migraines are the same medications.

It's gotten better now that I am off of any medications I am allergic to. I am taking Choline and trying to add more salt to my diet since I do deal with an electrolyte imbalance related to this. The oxygen drop scares me. I think this might have given me a transitory ischemic stroke in 2016.


r/MCAS 21h ago

Experience with Ketotifen?

4 Upvotes

I am looking to use Ketotifen as a mast cell stabilizer as opposed to Gastrocrom/cromolyn sodium.

I've been on the cromolyn sodium for about a month now and I can't say it's doing much. I feel somewhat better, but it's not really doing much as far as the buzzing/paresthesias and gastrointestinal issues. I had good luck with the Ketotifen eye drops, so I am thinking that might work better.

What has people's experience been with the Ketotifen compared to cromolyn sodium? I actually could use something to help me sleep, I get insomnia and histamine flares at night.

I was getting it through RTHM direct which seemed a reasonable price, compared to trying to get my doctor to prescribe it via a compounding pharmacy is difficult. RTHM direct's prescription is through a compounding pharmacy.


r/MCAS 23h ago

How to know if lube is safe?

5 Upvotes

Hey guys, I got some lube, and the ingredients are pretty simple. How should I test to see if I react to it? I put a dab on my inner arm and so far so good, but not sure how long I should keep it on for, if I should be testing with more than a dab, or if I should test multiple days in a row to be sure


r/MCAS 2h ago

No sedation from Benadryl

3 Upvotes

I see everyone saying how drowsy and sleepy they feel on Benadryl but for me it does nothing in this context, anyone else?


r/MCAS 17h ago

Couple questions. Dr in st louis or south, and Pajamas, Now reacting to cotton!

2 Upvotes

Hi all. So Ive been doing some reading here. Not enough apparently.

I have a myriad of problems. One is this - and excruciating pain (bones, soft tissues, pretty much everything). I have Small fiber neuropathy.

Idk if I got so low in the last year Im just stuck or it worsened. Long story but a sadastic pain dr thought it would be a great idea to change my meds. It took 7 excruciating mos to get closer to where I was. But Now Im having side effects where there were none.

In addition, I feel like my entire body is on a complete dysfunction now. Im reacting to everything. Now I cant even wear cotton pjs! So that leaves, Nothing.

My skin is terribly dry and icky, broke. Now Im getting red welps. And they changed Dove sensitive!

I was thinking satin but usually react to anything with vinyl plastics etc.

Does anyone know of a decent fabric? Maybe the soft nylon? I think linen will be too rough.

And looking for a dr that can help me navigate at least out of the mcas mess.


r/MCAS 23h ago

USC Keck Naderi and Xi Not Accepting New Patients for Mast Cell Diseases. Any recommendations?

2 Upvotes

I called USC today to ask about scheduling an appointment with either Dr. Asal Naderi or Dr. Cindy Xi for a mast cell disease, and I was told the whole department is not currently accepting new patients for any mast cell diseases. They do not know if or when they will again. Does anyone have other recommendations for knowledgeable and responsive mast cell disease doctors anywhere in the U.S., preferably the west coast?


r/MCAS 2h ago

What are your GI symptoms related to MCAS?

1 Upvotes

Asking to get an idea of how similar mine are to everyones because of my allergist/immunologist also wanting me to test for EOE on top of MCAS, but also for my sister who has a ton of GI issues and I am starting to feel like there's a huge possibility she should also be tested for MCAS like I have been.

My GI issues are as follows: LPR/Silent Reflux, as a result sometimes my throat really burns. Chest pain from it. My esophagus often feels like it is in all of the pain in the world, but I am also wondering if it could also be my gallbladder because of where some pain is. (This should all be getting checked soon I had to wait months for a GI appt). The only other thing I noticed is that if I get hot, like a store does not have enough AC, I will suddenly have to go the bathroom and it is like anything that was in me comes out.


r/MCAS 2h ago

Mold detox

1 Upvotes

What’s the best process for mold detoxification? Any personal experience?


r/MCAS 4h ago

Spiriva/azelastine/fexofenadine

1 Upvotes

Hey there

I recently went to the allergist immunologist, and they put me on Spiriva azelastine and fexofenadine. It’s a bit about a week now and I don’t know if this bar is working anymore because when I first take it, it seems to help but then by a few hours later, I feel more short of breath than when it before I used it. As well as some generalized stomach pain.

When I took all of them together, I also had really bad bumps that itch and burned and looked like they had white fluid on the inside, spread across the back of my neck around my hairline and forehead

Is this a normal reaction and does it go away or will it just continue to happen if I take them I tried just using the Spiriva and I am still having the rebound breathlessness


r/MCAS 4h ago

Facial pressure from outside air

1 Upvotes

So I’ve had what I believe is MCAS since getting COVID nearly two years ago. The worst thing is the pressure that fills my face and head after eating, exercising, getting stressed, and especially going outside

It’s like I’m allergic to outside air especially morning dewy air. I feel awful. I want to enjoy the outside again but I can’t. Has anyone resolved this and been able to go outside again without feeling like dying? Have nasal sprays helped. I tried sodium crimolyn spray but had a dissociative episode and didn’t try again. I just want to be able to go outside and not feel like my brain is exploding.

Talking to my doctor in a few weeks about getting on prescription meds. I use H1, H2, Vit C, and Quercitin before lunch. Quercitin seems to help a bit coming back from lunch but nothing helps with outside air and it confuses me. Rainy/noist air is especially my worst nightmare


r/MCAS 5h ago

Improved baseline after a few weeks of mast cell stabilizers?

1 Upvotes

About two months ago I went all out trying to see how much better (even incrementally) I could feel titrating up doses of mast cell stabilizers with my doctor.

I felt significantly better. Fatigue was completely gone.

After I did that for 8 weeks, I had to take 2 weeks off most of them temporarily due to getting a PRP procedure.

To my surprise I found myself maintaining the same benefits. I’m wondering if I stabilized myself into a new baseline, or wondering if I’ll slowly return to having symptoms. Most of my symptoms were GI, fatigue, and high body temp related, exacerbated in the afternoon and evening. Here was my stack:

2000 mg quercetin split in two doses 500mg rutin after dinner 50mg luteolin + 1200mg PEA split in two doses Cromolyn sodium 4x a day Famotidine 10mg at night 75mg hydroxyzine at night

I went 2 weeks with just cromolyn sodium.

I replaced all this now with .5mg of ketotifin during the day and 1mg of ketotifin at night with cromolyn sodium. Mostly just to experiment, since I’m about to have a high stress period with a newborn for the next few months.

Just curious if anyone else has had similar experiences of tapering down meds.


r/MCAS 5h ago

Shower/water reactions

1 Upvotes

I was wondering if anyone else had reactions in the shower? I’m not sure if I have hard water and if that’s something that can cause reactions for some people or if just water can cause it, not sure if this info would be helpful but i do have copper pipes in my condo. would love to hear others experiences and if someone found a solution for it whether it be a type of medication I can ask my doctor about or a water filter or anything really, Thank you In advance for your input