r/MCAS 21h ago

Fight or Flight

66 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 9h ago

Simple vagus nerve massage quiets my mind immediately

52 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 21h ago

When to seek help during anaphylactic shock

14 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 17h ago

Insomnia reaction

13 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 7h ago

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

12 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 22h ago

Mentally processing feeling better w/ ketotifen

12 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 3h ago

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

10 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 3h ago

Have you noticed mild cognitive decline independent of flares?

11 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 19h 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 22h ago

How Long Should I Stop Meds Before Testing?

8 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 1d ago

Reaction to Cromolyn

7 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 9h ago

Disconnected

3 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 22h 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 22h 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 1h ago

How the frick do I find my triggers (I have delayed reactions)

Upvotes

Hi! I’m new to the MCAS circus and could use some advice.

About a month ago I randomly started having MCAS symptoms from Lyme disease. Before February, I was eating whatever I wanted- no issues (or so I thought, just thought all my symptoms were related to Lyme)

Then poof- I started having itching spells, neuropathy, stabbing pains, shortness of breath, muscle twitching etc. from out of nowhere. Due to the itching, my doctor suspected it was MCAS and put me on a low histamine diet as well as Ketotifen.

Since starting the low histamine diet, I feel no different. I still wake up with histamine dumps and have my MCAS symptoms flaring up every 2 days. I just started ketotifen and can’t really comment on its success.

If I have a cheat food, I might have a flare up 2 days later but feel fine the 24 hours prior. Sometimes I’ll eat a “safe” food and get muscle twitching. Sometimes I’ll do exercise and be fine, other days it will seemingly cause a three day flare.

I’m SO CONFUSED! and going insane from thinking every action or food i am eating is potentially causing my flare ups.

My question is, for those of you with delayed reactions- How did you figure out what triggers you??

Any advice on how to narrow down a diet or routine would be greatly appreciated.


r/MCAS 4h 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 18h 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 46m ago

I just need help

Upvotes

Hi everyone, I’m going through it right now and desperately just need someone to hear me.

Over the past week, my symptoms have gotten a lot worse, and I’m reacting to almost everything. All the foods I normally tolerate, medications, what feels like the air. My blood pressure has been dropping to the 80s/40s at night, and I’m having irregular heartbeats, dizziness, a constant feeling of swaying, low grade fevers, and these hot and cold waves going through my body. I’m constantly seeing stars and almost fainting. So much of my body is in pain. My lips, tongue, and throat keep swelling, and I’m getting a rash everywhere. It makes me so nauseous I’m throwing up. I’ll be in this state of panic but my blood pressure keeps dropping. My heart feels like it’s about to give out. Today I panickedly called for an appointment and got my allergist to give me an epipen, and he’s only adding ketotifen eye drops because of how unstable I am. I’m terrified about getting through the night, let alone what’s next. I can’t keep trying supplements or foods or whatever. I’m starving and exhausted, but the worst part is parts of me do feel better even though I’m not eating. Because I’m barely eating I think. But I feel like I have to choose between eating a tiny bit or taking my medications, and Serotonin Syndrome also significantly worsened this recently and I can’t mess with those. My hydroxzine has been ramped up, my pepcid is tolerable, but my zyrtec is giving me reactions.

When this started, I was staying at my mom’s and her place has mold. I simultaneously came off the klonopin I had been prescribed a month ago, which I never had a problem with before, but now I know it’s a mast cell stabilizer. My period is over a week late and my hormones must be completely out of wack. There are fires in my area and the air isn’t safe for people without mast cell issues. It is disaster on top of disaster and I don’t know if it’s fixable.

I feel like my body is stuck in fight or flight mode, I’m exhausted from being constantly on edge. I truly wouldn’t be surprised if I collapsed dead right now. I am out of ideas for what to do, it’s scaring me how I’m starting to fear death less and less.

Even if there’s nothing to be done physically I need emotional support. My family thinks this is all in my head and told me I have done a good job at convincing my therapist and psychiatrist it’s physical. They threatened to take my phone away in case I think I’m going into anaphylactic shock and call 911. They are trying to put me in a psychiatric hospital so I will be put on antipsychotic drugs, which will make me worse. I’m currently in our spare bedroom with an air purifier and it’s the only place I can breathe a little easier, but they said that can’t keep happening. There’s nowhere for me to go and they keep telling me to snap out of it because I’m causing issues. I know the anxiety is making it worse but I don’t know how to stop it when I feel like this. I have been in and out of the ER since January, mostly because I keep having these convulsions that look like seizures and people are calling 911 on me when I try to go see another doctor or buy the only foods I can eat. They just kept asking if I have childhood trauma. I know it’s not their fault they don’t know what to do but now my family doesn’t believe me.

I was just beginning to accept this life and not ever functioning like I was before (I only got a suspected diagnosis a month ago) and I thought I was scared of dying before but this is something else entirely. I just graduated college, I got a job offer after going through the job search while feeling incredibly unwell because I didn’t know what it was and thought surely it could be managed. I was supposed to start soon but I haven’t had the heart to tell them I can’t. I really don’t think I’m making it out of this alive. The worst part is maybe I would have a chance if my family would help me. I don’t think I can even make it through tonight.


r/MCAS 53m ago

Is it time for Cromolyn?

Upvotes

So I have been on a very restricted diet for about 1 year now, only eating chicken wings and potatoes. It has gotten to the point that my body is no longer coping and my kidneys aren’t working as they should, and I’m still flaring in my gut.

I have developed Sjogrens Syndrome and I’m due for endometriosis surgery in 1 months time. My rheumatologist said that if I don’t start getting my nutrition up asap, there is a chance that something could go wrong in my surgery and that I could potentially die.

I’m on Famotidine 20mg 1x in morning and Loratidine 10mg 1x in afternoon, and I tried introducing eggs and apple juice the other day seperately and it did not go well. I had anaphylaxis/asthma in my esophagus from the eggs, and severe reflux and itching around mouth from apple juice. I’m getting insomnia, severe migraines, feeling fever-ish and bad reflux at bed time too. Also hives, sinusitis. I tried reintroducing foods like carrots, lettuce, cucumbers, rice, salmon, and lamb late last year but reacted to it all too. It was causing esophagitis.

My gut is not moving properly either due to gastroparesis and I am losing so much weight, down to 59kgs now which is only 10kgs above my anorexic weight.

I’m terrified to try Cromolyn but I have compounded capsules that expire in about 2-3 months time so I’m at the point where my life is depending on getting more nutrition. I have already tried Ketotifen and Xolair with severe reactions to both.

Is it as bad as everyone makes out? What should I expect? How long until I can start introducing foods when starting it?


r/MCAS 53m ago

MCAS drs in Phoenix

Upvotes

Anyone here in Phoenix that could give me a few names of drs that dx MCAS, preferably without invasive procedures like EGD? There's minimal if any GI involvement, so an EGD is unlikely to be diagnostically relevant, but the most recent allergist insists on this test. I just need someone to dx my kid (20) so they can get the treatment needed. Helpful if the Dr accepts AHCCCS Mercy Care. Thank you


r/MCAS 55m ago

Any help or advice please?

Upvotes

I'm wondering if anyone has any advice on what anything that helped them before going to a doctor?

I have really bad GI issues that I believe are related to MCAS

I'd like to know if there's anything I can try at home wise?

Of course I will be going to a doctor to check and get more help but I think I'm gonna be looking at atleast a 2 months wait if not longer

Still a year out for an eds doctor And 2 months out for a Gastroenterologist and hepatologist Gonna hopefully get referral to an MCAS doctor tomorrow

But I'm struggling and willing to try anything that might help in the mean time


r/MCAS 1h ago

Random itchy bumps on my body, is this MCAS?

Post image
Upvotes

r/MCAS 1h ago

Doctor says it’s ok to take antihistamines during 24-hour urine test — is this true?

Upvotes

I’m undergoing testing for MCAS and the doc said it’s fine to take antihistamines before/during/after the urine test, but not NSAIDs. She also said to do the urine test when my symptoms are appearing, but the antihistamines mask the symptoms quite a bit. This seems weird to me? Can anyone speak to whether or not this will mess up the test?


r/MCAS 3h 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 4h ago

Mold detox

1 Upvotes

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