Mcas flare reddit

Mcas flare reddit. Actually I did try florinef once and saw white spots on my lips after a few days so I didn’t go further. So it could be the case where your neuropathy got worse as you MCAS progressed. Got an IBS diagnosis, pursued SIBO, but in the end I thought MCAS. 5 into my tsw journey and I have come a longggg way. I felt like it was probably coming on anyways but I decided to try a small dose of lexapro bc my mental health is getting bad and it pushed it over the edge. They know which supplements are helpful for POTS, MCAS, and long-COVID and they check to make sure they don’t interact with any of my medications. seizures and psychosis is the first mcas flare sign for me Thank you for your submission. Wim Hoffer here. Ketotifen is my lord and savior of medications in my MCAS arsenal. My bladder issues went into remission, but I got post-viral POTS and MCAS in 2017. Usually around seasonal changes and binges of bad foods I get flare ups. r/MCAS A chip A close button. I'm still learning about this I was DX around 2 years or so ago and I have had a hard time finding a doc In my area - my doctor is my Dysautonomia specialist and I have to see him virtually because he's 3 hours away. I've found that olive leaf extract has been great for my MCAS and my POTS. When my doctor told me I probably had MCAS I got on Reddit and felt extreme anxiety from reading about people who had symptoms so much more severe than mine. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. When I try to walk for exercise my legs itch like crazy. Another thing that’s begun to happen since I developed mcas is that sometimes when I’m in a flare, my bones hurt. Get the Reddit app Scan this That said, my MCAS specialist suggested I take it 30 minutes before meals, and mix the powder in with water so it gets into my digestive tract, starting with my mouth, instead of farther down once a pill is dissolved. Or check it out in the app stores but not sure whether to consider the timing during a flare or not. But I also have EDS and dysautonomia. Hey there fellow MCAS + HyperPOTSer😀 Can you tell me your exact med regimen when it comes to MCAS? I have also noticed that orthostatic stress primes my MCAS to flare worse and more. I have not tried ghk-cu. i have suspected MCAS, highly likely due to my hEDS, POTS, and Anklosing Spondylitis diagnoses. . What are some things I can do and take extra care of while healing given I already have MCAS and recovering from an infection is even harder due to this Has anyone responded positively to Ketotifen within days of starting it? My stomach is crazy bloated since starting it. I had to spend 40 days in bed, due to my POTS flaring up every time I would even sit up, and my MCAS I had MCAS diagnosed years before covid and the vaccines but I did develop neuropathy as my MCAS progressed. Actually, his testing caused the worst MCAS flare I’ve ever had, so that’s been fun. Try probiotics like Kefir or this UltrGI Replenish Powder. Weirdly, I was also suddenly needing to get up to pee 2-3 times a night. The unpredictability of MCAS flare-ups can heighten feelings of uncertainty and fear. I also took antihistamines (loratadine) for flares while my body started to calm the f* % down. Since my most recent massive mcas flare- before it I was tolerating a wide variety of supplements regardless of fillers etc— I cannot tolerate vitamin D. The military doctors said I was predisposed to develop it but the burn pits pushed it beyond the natural progression into full blown mast cell newly almost-diagnosed with MCAS here wondering what meds do u all take when ur flaring? do u do anything different than when not flaring? usually i take pepcid, allegra & montelukast/singulair in the morning alongside my cromolyn 3x a day. Idk if amitryptline was making MCAS worse or not, but it was def disturbing the POTS stuff. My MCAS flare symptoms are heightened anxiety and irritability, digestive upset, joint pain, exhaustion, sinus issues and bladder flares. I don’t know about repeated use, and how often you’re flaring, and at what level of use the side effects become concerning, by my PCP has done a 5 day course to stop an ongoing MCAS flare for me before. It sounds like you might be dealing with Mast Cell Activation Syndrome (MCAS)? I’d recommend consulting a doctor who is knowledgeable about Histamine Intolerance (HIT) and MCAS. I have a long-time diagnosis of MCAS, which is normally very well managed, but has been a nightmare to keep under control since my second Pfizer vaccine last spring. I use Seeking Health brand and also superior source. Please note: The content on this subreddit is not intended as, and is not a substitute for, medical advice or diagnosis. Tulsi/holy basil. They're Max strength so it's generally the 20mg 2x a day instead of 10mg. For cleansers and moisturizers, I have had a lot of luck with Avene Tolerance Lotion cleanser and the Avene XeraCalm lipid replenishing cleansing oil and XeraCalm lipid replenishing cream. Social Implications: Social activities might be curtailed due to pain or the fear of triggering a The Mcas flare ups around my period are SO bad and my period just jump scared me a week early and I’m now so nervous I’m not going to be able to Skip to main content Open menu Open navigation Go to Reddit Home unlike a lot of people with MCAS, I don’t experiment with hives. And because of this my estrogen dominance is going crazy (histamine stimulates production of estrogen, and estrogen stimulates release of histaminea vicious cycle). There are specific medications available that can stabilize mast cells, which are 15K subscribers in the MCAS community. Every time I flare, it’s because I’ve forgotten to take it in a while. I’m on Flonase, Zyrtec, Pepcid, and Cromolyn 2 vials 4 times a day. Going to reach out to my doc but we're both learning about MCAS together so wanted to ask here, too. People with dysautonomia respond well to high dose thiamin. So if it's a med you need to take you can always try getting it compounded and see if you get the same reaction. I had a lot of stomach symptoms and bad drug reactions but didn’t know it was allergy. Finding ways to Things like amytriptaline and nortryptaline have been shown to not only be effective anti pain medications but also very slight mast cell stabilizers, yet I had a really bad mast cell flare up Here are the vanities that are in rotation this week! Grab them while you can! Vanity. When I was first diagnosed with mast cell activation syndrome (MCAS) I was totally clueless about the condition. Normally my flares last two weeks, but in extra stressful situations like a surgery it's lasted months. The itching and bumpy rash has spread from just the small spots that were exposed, to all over their body. And fast a lot around them. Both not the best. Any time I have a flare of anxiety/depression I know I’m having a mast cell reaction. I mean they are MDs, well my primary care is a nurse practitioner, but they have studied functional medicine. Cue this past week, I’m exhausted beyond belief and so, so depressed. I’ve always suspected my Lyme disease to flare up but is there any reason Doxy would help MCAS flares? As I said before this all started when I binged a bunch of food on thanksgiving, primarily Dairy and Carbs. I have recently been diagnosed with MCAS and developed severe reactions to marijuana about 2 years ago. I'm in the same spot as you right now- eating super low histamine (just coming off of a one month elimination diet to test out sensitivities a little more carefully), daily antihistimines, a large amount of vitamins and supplements. It wasn't a significant increase from my current symptoms though. It causes acne for me in a weird way. It flared up my neurological symptoms (burning and pressure in head, tinnitus, brain fog, cognitive dysfunction, fatigue) so I stopped taking it. Thank you for your submission. Like I have the flu. Hi. Every MCAS patient can react differently to the same trigger. For Dry Skin. Multiple medicines can be used to help alleviate the symptoms of MCAS. It creates horrible horrible physical symptoms of anxiety and pseudo seizures. My go-to for flare mode: extra dose of my regular antihistamine which is Zyrtec, add Hydroxyzine at 25 mgs and take that every 12 hours until symptoms subside, hydrate to the max, rest and Sebastian Kidder, the 24-year-old stepson of WWE legend Ric Flair, has allegedly died by suicide at the family's residence in Georgia. Diet has been pretty consistent other then a recent attempt to eliminate histamine and limit oxalates in Although j can handle white rice just fine. I don't take ketotifin but I wish I could. The first additional quarter caused no side effects, but when I jumped to 1/3 a few days ago, I noticed a big difference. Less reaction to things and less things I’m reacting to. I'm not diagnosed yet. Still very hyperpigmentation and flare occasionally but my skin does not ooze and bounces back pretty fast from flare episodes. I’m going slowly. (Couldn't sleep on it. , and Vitamin D is critical to supporting the health of these individuals who for the most part cannot get adequate Vitamin D from being outdoors like the average healthy individual (I'm unfortunately in this group myself). Tachycardia, Bradycardia. I suspect an MCAS flare. I thought I was getting sick at first but it feels like a flare up because its more that everything is so itchy. I think the length of flare varies. As most EDS folks I'm no stranger to headaches and chronic pain But since November I've been in a horrible flare that inlcudes new symptoms like highly variable BP and heartrate, insane muscular spasms in neck, bulging temporal veins, difficulty swallowing, daily tonsil stones, feelings of throat constriction and I'm going to stock the freezer with a few small super simple meals, and go to them for the next flare. I also have POTS and MCAS. Idk what else to do😭I’ve been literally icing my face because it’s flushing and my nose and eyes are so itchy. I have a very toxic work environment, like my principal is a psycho, and I think these mental/emotional factors have had a huge impact on my MCAS flare ups. I get bouts of insomnia and when this happens I often wake up with hayfever like symptoms and tinnitus. (This is the sort of thing that even MCAS experts sort of can get you started on but it really is just something you may have to figure out which H1 & H2's, dose and quantity work for you. It's not really a soap which is important. Please consult your doctor for any medical questions or concerns. The doctors all have different opinions. Hi u/Char_itable0408, . Mast Cell Activation Syndrome (MCAS) is a disorder where components of the blood stream, namely mast cells, secrete various substances which can be involved in an allergic reaction or inflammatory reactions. During the summer, my POTS and MCAS symptoms were out of control due to accumulated mold exposure and stress. If you are looking for information/data on how common a particular symptom or condition is with EDS or any of its comorbidities, or whether there is any connection at all—it is always best to ask for links to reputable studies, instead of TL;DR: MCAS is linked to gut health and bacteria/fungi can cause MCAS to activate. At the same time my MCAS symptoms where also increasing. She mentioned that "one of the only experts in the country" is in Denver and they're doing experimental treatment for MCAS there. Concrobium fixed the mold problem within a week. No offense. These include mast cell stabilisers; which help restore stability to the mast cell and reduce its reactivity to different triggers, and mediator blockers; which block the release or the effect of different mediators released by the mast cell. Log In / Sign Up; What do you do to manage flare-ups and symptoms overall then? Tried a super strict diet. I know it’s an MCAS reaction cause my first signs are usually itchiness and redness/hives. I was born with MCAS, and have been living with it since. A more than insignificant percentage of those with MCAS also have EDS, POTS, ME/CFS, etc. I have hyperadrenergic POTS MCA (essentially POTS due to MCAS, and it causes high blood pressure on top of high heart rate). In my recent flare up this fall I developed an allergy to chicken. The onset is immediate. I am also in a flare (6 months for me), which is what prompted me to stick with cromolyn this time. But overall, healing has and is still taking place. 16K subscribers in the MCAS community. So thankful to be on the other side. My symptoms are those similar to Dysautonomia with tachycardia, fatigue, brain fog, feeling faint when exposed to triggers. He was very insistent that I will feel better, though. H1B/H2B twice a day, low histamine diet, cromolyn. I don't take any steroids and during my flare-up it is very hard to give me new medicine because it's hard to tell if the itching is from the flare-up or medicine. In those situations, go back to the basics: Use Mast cell activation syndrome (MCAS) is a term referring to one of two types of mast cell activation disorder (MCAD); the other type is idiopathic MCAD. 25,000. Neon Trail Underglow. [1] MCAS is an immunological I haven’t officially been diagnosed with MCAS but I am in the process of diagnosing POTS and hEDS, and likely MCAS as a piece of a much larger puzzle. 🫠 I had mostly fatigue and psychiatric symptoms. The whole dysautonomia shebang. If I accidently ate a trigger or feel like I have a MCAS flare coming from food, I'll take a different H1 or H2 inhibitor as needed when it occurs whenever that is in the day. Lowering mast cell activation might lower the collagen degradation as tryptase is a protein breaking enzyme. My body is so angry right now. For self-remediation, I recommend using a spray called Concrobium. Not to mention, it also works really well for helping high blood pressure. I was fine with marijuana use in the past, but not anymore. Reply Yes! Quercetin removes a HUGE chunk of the burden, though reishi mushroom supplements help enormously as well. Now, I often break out literally within a few minutes of a reaction or flare. It’s a very long story but MCAS occurs when the mast cells in your body release too much of the mediator substance that causes allergy-like symptoms. I am currently in the middle of a histamine flare (sleep issues and tinnitus Then I’ll wake up in the morning feeling absolutely terrible, and surprise, two hours later I’m bleeding again. I’ve tried PEA I’ve tried Benadryl Ever since the flare / reaction started all I want to do is sleep. Please note: The content on this subreddit is not. CJC 1295 without DAC and Ipamorelin have helped quite a bit (GH secretagogues) and GHK I thought l glutamine powder is a good for MCAS and gut healing and oxidative stress? I’ve seen only success story about it here on sub. My holy Grail for soap is Cetaphil flare up relief body wash. Getting on it was rough, it’s not uncommon to experience a solid flare when starting it. My wife has MCAS (as do I, but we have different symptoms). Here is my story of living with MCAS and how I manage symptoms. MCAS seems to fit him to a T, and then it seemed like I might have it so I put myself on an elimination diet for MCAS as a test. So a flare can very easily be finite, but you would still want to pay attention in case it seems like it might be coming back. Symptoms range widely. Hi, I (22F) have been in an MCAS flare for over a month now and something I had experienced prior to the flare has become much worse. Basically slow motion strength training for 20 min to hit all my muscle groups. It may come back as nothing, in which case you know you can ignore it in the future and not worry. then i tracked my BP & heart rate for 3 months (fine, except for random spikes here and there) I realized I didn't mention anything that helped for me earlier. I’m definitely not suggesting everyone will have the same results or Thank you for your submission. Like immediately, boom, cystic acne, pustules, all of the worst kinds of acne. I also had a reaction to physicians elemental diet dextrose free, I’m having reactions to my once safe food——buttercup squash. I want to know does this feel like a flare to anyone else on here, and if I’m about 1. Post Covid I think I may have developed MCAS - not been diagnosed yet but have been reading comments on the Covid long hauler sub and this would make a lot of sense. I stayed on it for 15 months before I weaned off. This isn’t an acute illness, it’s a reaction our bodies have to stressors. I have MCAS I take TA-1 which allows me to take BPC-157, however when I tried TB4 I had a horrendous flare and I simply won’t be trying that again. POTS flare by amitriptyline was prob stiring up the MCAS. That's why I think this could be a MCAS flare-up brought on by the heat and poor lifestyle choices starting a month ago. My POTS, MCAS, and my primary care provider are all into functional medicine. I’m on Xolair among other things. People with MCAS commonly react to fillers in meds. Quit weed a while back and have noticed a serious uptick in MCAS flares. I was just on a 2 week trip in Europe and had a lot of symptoms (vertigo episodes for days/vestibular migraine, emotional meltdowns, GI problems [constipation and diarrhea]) and a lot of this has continued now that I've returned home 2 days ago. That was one of our early experiments before I had an MCAS diagnosis, and it I had my 3rd appointment with my allergist on Thursday and we were talking about the flare up I had on my flight from Phoenix to Denver for work. During my what I assume are MCAS flares (hard to differentiate Lyme and MCAS) I have tachycardia, brachycardia, tremors, pre-syncope, feeling weak and faint, feeling unable to catch my breath (ox levels are ok though), awful flushing and rashes in the face, full body itching, fatigue from walking short distances, throat closing up (partially) difficulty breathing through nose and I only have MCAS as far as I know but yeah I feel constantly ill 24/7 but get flares which make things worse. When the flare went down it stopped hurting and now I take the breast pain as a warning sign. I'm learning so much on Reddit. Now I started taking antihistamines (Bilastine + Famotidine) and Ketotifen while I wait for my Cromolyn meds to arrive but I read that antihistamines can cause weight gain and I am terrified. But it does seem my tolerance to stress and hear is lower and it flares up more easily when I am eating foods with more histamine or inflammatory. Blue Smoke. I couldn't tell you which is more effective, but before I was diagnosed/aware, I was taking both for a while and noticed I felt so good, even ate all sorts of histamine rich foods with few issues. Delta Nitro. I spot on and off for probably a week while my period ends, and the on and off intense flares drive me crazy. My vitamin d is very low. the dysautonomia is getting bad. A lot of this is from mycotoxins and I’m just starting to detox them. I’m trying to pin down the reason for it and was wondering if it could be related. Posted by u/sleep_like_the_dead - 4 votes and 10 comments My vitamin d is very low. According to reports, Kidder died of a This feels like a MCAS flare-up that I had before (the diarrhea and chills especially). Or you may see MCAS is a rare condition where the body produces too much histamine. Or check it out in the app stores   Except when i get a flare and a temporary setback, most and worst symptoms takes a while to come back though but brain fog is immediate. Hi there, newly diagnosed hEDS as a 36 y/o female. COVID MCAS protocol? Just tested positive with COVID, I have mild symptoms currently but have MCAS history. Allergic type reactions can cause things like suddenly feeling very hot, dizzy, flu like, tummy pain or upsets etc. However, before discussing MCAS, we need to understand what the mast cell is and where it comes from. I actually just switched over to drinking decaf coffee (good quality so there's better quality control for mold - you don't need to buy the "mold free" coffee because it's kind of a gimick but any small batch roastery will probably have similar quality) because I Thank you for your submission. Peaches Gave Me a Flare - And it’s not calming down . but ive been running low on cromolyn & it's not arriving at the pharmacy still so ive only been able to drink it 1x a day Get the Reddit app Scan this QR code to download the app immune disorder. However, MCAS is a systemic immune-system disorder, as we all know, so just because it presents in the lungs or skin, doesn't mean you have diseases with those organ systems. I don't react to Cromolyn but I'm also not sure how much it's helping me. Hey y’all, for all my people who menstruate and it causes their symptoms to worsen, what do you do to help you To summarize it took: the classic MCAS meds H1 & mast cell stabilizers plus a low histamine diet, then correcting vitamin deficiencies tied to MCAS (after confirming), working to support MCAS genes (after learning I have them) and, very importantly, working on my nervous system using polyvagal exercise. I have inflammation all over my 21 votes, 142 comments. In regards to the natto that’s what I was thinking in terms of the histamine level but apparently mcas/mast cells can aggregate clotting so I was looking into trying to help that. It helped. I was down to eating only chicken for about 2 months, and now am up to 5 foods, so I have had progress. I was originally diagnosed with SIBO, did a few rounds of supplementation protocol, then we figured out that MCAS was probably the root cause. Doc has concluded it's an MCAS issue. I had a horrible response to Cromolyn so this would be the polar opposite. Look up probiotics for MCAS and start taking them. But thanks I seem to be having huge issues with pots in MCAS flares. 40,000. r/mcas A science-focused sub for Mast Cell Activation Disorders. I hadn't ever heard of it, and definitely didn't know about triggers that would cause my mast cells to Here is the list of medications that you and your doctor need to avoid using if you have MCAS and a list of potential alternatives that may support your health issue without further triggering MCAS (1, 2, 3). Hey, One of the foremost MCAS doctors/researchers is apparently at a university not super far from us, but he only treats those already diagnosed with MCAS, Need to preface this by saying I had Lyme disease and my doc thinks it caused me to develop MCAS symptoms. I suspect I have r/MCAS or r/POTS, but with mostly digestive issues. I have no idea why it happens a lot, but not all of the time, no idea exactly what sets it off. Before the meds, working out was the fastest ticket to Flare City. I get major flare ups from the sun but I have never known for sure if this is part of the autoimmune disease my doctor suspected or MCAS. My MCAS flare up isn’t as psychotic but is psychotic enough that I haven’t been able to make it chill tf out. 5 weeks leading up to my period. The general rule is that bifidobacteria degrade histamine, but lactobacillus is different -- some strains increase histamine and some decrease it. I noticed some posters feeling hopeless and wanting some success stories, so I wanted to just be a I realized I didn't mention anything that helped for me earlier. I tried antihistamines and low histamine for months but they didnt seem to do much for it. Thiamin deficiency could also cause problems. Also this thing where it takes a while for autonomic nervous system to calm down after a MCAS flare up also rings familiar . Which explained why the more aggressive we were treating my MCAS the more tired I was. Oh I hope the expert you spoke to is correct!!! I'm also 7 months post COVID and MCAS completely turned my life upside down. I feel like I actually stated healing better after coming off amitryptline and doing low histamine diet. It really would have helped all those years to know so I could have treated myself appropriately with additional antihistamines. Im hoping for any success cases or any positivity that you have had in terms of healing from MCAS. Before I was on extensive treatment for my MCAS the SIBO treatments always gave me reactions. It’s beyond crazy I’m struggling in a flare right now. I quit the lexapro after a few days bc j felt like things were getting worse but now I feel like things are even worse if that’s possible. Understanding MCAS, how it impacts you and knowing your triggers, where possible, is helpful. Cold exposure is great if you begin doing it at the right time, when your central nervous system can handle it. For the excessive dry skin associated with MCAS - and even with taking the high doses of antihistamines most of us are on - pure cocoa butter, shea butter, or jojoba oil can provide intensive moisture with staying power, especially for areas like the hands and arms. Or check it out in the app stores   Thank you for your submission. I’m currently in a flare up and I figured I’d dry brush and do RLT, a regular routine of mine. Regarding the antibiotic situation - I'm not a doctor but just speculating, have you tried a probiotic? Thank you for your submission. Honestly, listen to your body and stay away from marijuana products. It helps calm my system down and gives all my other meds a better chance at doing their job. When I had my initial trigger for MCAS (starting HRT) all my old injuries flared up. Ive never had it flare up directly after eating something that Ive noticed. Living with MCAS can be tough, it can help to plan ahead, to try and reduce the impact flares can have. I'm at that point that my mental health is starting to crumble (after reading through some posts I guess this can be another symptom of an MCAS flare up). Here at the list of symptoms I had that have now diminished: Thank you for your submission. We are not able to validate the content of these discussions. I just saw the immunologist this week, so it’s too soon to tell how well the MCAS meds will help. When it's totally quiet, I hear conversations. My allergist is still “hoping” I don’t have it so really only antihistamines and mast cell stabilizer I’m on is ebastine, which really really does help with the daily diarrhea i was having and somewhat the red dots rash. No other symptoms. 5mg twice a day it has helped a bunch with my POTS symptoms the MCAS I've had to learn to eliminate certain foods altogether which has helped in lessening my flair ups i take antihistamines my immunologistsaid that fexofenadine is the best kind of antihistamines for MCAS anything in the H1 TL:DR - Wim Hof Breathing (not cold exposure) was able to get my MCAS to a state of remission. Badly. Hey, there. So not sure if these flare up symptoms could be caused by that. What is Mast Cell? Was doing very well from hEDS thanks to PT, ergonomics etc these past few years but the MCAS flare I'm in after herbal antibiotics is starting to effect the joints due to inflammation. MCAS is sort of a disease of extremes and most of the time you have to take more than the labeled rec dose to treat. Please note: The content on This is the world of MCAS, a systemic mast cell activation disease that intertwines with chronic pain, inflammation, and a myriad of other sym and depression. Once I realized that quercetin is a mast-cell stabilizer I added it to my regiment for treatment. The mental health component is real though, MCAS flares put me in a terrible state of mind. I have hyperadrenic POTS and MCAS I am on ivabradine 7. Symptoms started after I binged bad food during thanksgiving, also quit tobacco and caffiene aftee symptoms started. Fast forward to my booster in November, which turned some mild symptoms I had historically chalked up to However, MCAS is a systemic immune-system disorder, as we all know, so just because it presents in the lungs or skin, doesn't mean you have diseases with those organ systems. All of these natural emollients are ideal for managing straightforward dry skin and Chronic migraines. Yes 100% MCAS can cause mental health issues. It doesn't just not make things worse but makes them better. I'll probably also make a 'sweet things' board for flare ups and put a stamp on it every time I crave but don't eat sugar. Up and down. I had low key but undiagnosed MCAS before getting covid. I'm 6 months into my first MCAS flare, and I'm having real trouble tolerating anti-histamines or other medication, and I'm running months long sleep debt. I had some brain fog and trouble breathing after taking it. I am also not a fan of antihistamines because long term they can cause more flares and other issues. Antibiotics can destroy histamine-degrading bacteria. A science-focused sub for Mast Cell Activation Disorders. MCAS symptoms started after getting the Covid vaccine. I found a GI/MCAS expert who believed it was worth a try to treat MCAS - full court press. That’s really good to hear! MCAS itself can cause drastic weight gain or loss (depending on the person). I’ve never had any joint/tendon problems before, and I’m really not sure if this is something that appeared due to MCAS and should mention to my doc, or if this is just a mundane symptom of no longer being 20. It could be mcas or dysautonomia as well, both of which have been connected to long covid. Skip to main content. Getting terrible periods, hormonal acne, sore boobs, constipation, cramping I’m trying to just get more stabilized and lower my estrogen. I believe this recent SIBO treatment caused a huge MCAS flare and it’s so hard for me to Since getting worst with MCAS I struggle with losing weight and with bloating. I'm in the process of finding a good MCAS specialist. I’ve known for a while now I’ve been histamine intolerant but I’m new to MCAS and this seems to be MCAS is not the same as a histamine intolerance and it affects other parts of the body apart from the gastric system - such as skin, bladder, heart. Or check it out in the app stores   I’ve had my flares relatively under control the last year and haven’t had a bad one in a while. Especially around viruses. Expand user menu Open settings menu. It's been a long process of talking to my doctors, reading books such as Dr Afrin's Never Bet It is so interesting that you mention the EDS part because since I’ve started healing from MCAS and preventing flare ups, I’ve noticed a huge improvement in my hypermobility too! I know some people don’t believe you can go into remission but I’m doing so much better on both fronts. I had a huge mold problem in my bathroom. Log In / Sign Up; If I feel a flare coming sometimes a one-time 12-14 hr fast I am in a pretty bad flare, but yesterday I felt like it was getting a lot better, the only thing I noticed were skipped beats, so I took a Magnesium complex with malate, citrate and glycinate. I’ve been doing workouts similar to how the Perfect Workout gyms do it. Go to MCAS r/MCAS • by sungodapollojr. I also itch all the time in specific areas. Get up out of bed and my Garmin watch says 99 stress and 120bpm 😂I have florinef and propranolol here but I’m too chicken to try them. I was on it at the time of v. Hi, MCAS community! I have learned so much here, and I'm hoping to find some wisdom here again. 2 weeks into the new medicine I got my ankles back, I’m sleeping. I developed SIBO which I assumed was because of my poor diet but I now realize was likely a combination of a poorly managed MCAS flare, improper diet, and my immune response to the Can a concussion set off a flare? Does anyone else have a flare after an injury? You can take genetic test (23andme) and then plug raw data into Genetic Genie or Nutrahacker (free). Well, I’m significantly better than I was in 2020, but no where near my pre-COVID self. Log In / Sign Up; I’ve been in a multi-week flare and decided to add in Stinging Nettle. ) The second shot gave me extreme brain fog for a day, to where I had to cancel my meetings. I only stumbled upon this because my brother and I almost certainly have EDS, and he has real digestive issues, and googling brought up MCAS, but also a number of other digestive issues that can stem from EDS. Never even heard of MCAS but I have so many of these symptoms. mcas is a common comorbidity. Get the Reddit app Scan this QR code to download the app now. My MCAS mostly manifests as GI pain and inflammation, and it seems to get worse with every menstrual cycle during me luteal phase. My doctor is doing her best to treat me, but isn't super knowledgeable. Don’t know if it’s worth potentially triggering symptoms though. Terms & Policies Anyway, last May I experienced extreme MCAS => HyperPOTS flare up, presumably due to added histamine load due to pollen allergy season. Flaring terribly. I flare so bad that once it subsides during my period, i feel like an entirely different person. My flare ups follow a common pattern: fatigue, aches and pains, severe swelling, sore and scratchy throat, sensitive skin and rash and sometimes hives and sores. This was April 2021. Regarding peptides, BPC-157 flared my MCAS real bad, even under the cromoglicate+h1+h2+laundry list of other stuff that has it halfway controlled. Just getting a cold was kinda scary. But I also noticed two MCAS flare type things didn’t happen today that have happened everyday often multiple times a day for the last 18 months. I tried Ketotifen compounded and from overseas. Mastocytosis occurs when your body produces Living with MCAS (Mast Cell Activation Syndrome) means facing a daily puzzle of symptoms that can range from mildly annoying to downright debilitating. My flares are usually linked both to what I eat and my hormone cycle, typically I feel way worse in the luteal phase, 2. Question is, though: can quercetin be taken continually, or should it be cycled? But as someone with MCAS I feel comfortable stopping fairly quickly, as I know that people with MCAS sometimes react badly, and these reactions can cause longer lasting flares, so if my body is telling me something is bad personally I listen to it. I had both low and high BP before on meds for POTS. Fibromyalgia. For me, getting sweaty and increasing body heat flares me up so I stick to low impact exercises. My symptoms came on shortly after my first Covid vaccine (2 years ago) and I have had issues ever since. A bit better but taking a long time to settle down - I'm eating five foods, and ordered air purifier plus masks. First Moderna shot made my arm feel like shit for a day. I have dysautonomia,mcas and hypothyroidism and the symptoms all overlap so it's hard to tell sometimes. It all keeps getting worse. View community ranking In the Top 10% of largest communities on Reddit. I should expect for a flare in my symptoms post-infection and during recovery, and 2. For context, my MCAS is probably moderate in terms of severity, and mainly involves allergic rhinitis type symptoms. After my mcas diagnosis in March, one search of period and mcas explained it all. And, of course, being through one flare doesn’t guarantee you won’t ever have another. 21 votes, 142 comments. TIA! Thank you for your submission. If it’s minor, I do simple tasks like straighten the house, bake bread, take a Reddit iOS Reddit Android Reddit Premium About Reddit Advertise Blog Careers Press. I'm still new to figuring this out (and fucking up a lot), but when I have a flare, I swear I need to pee more frequently. Most likely very much influenced by MCAS unbeknownst to me for a long time. I’ve had to pay out of pocket but if you are super low it could potentially help get your MCAS back down out of this flare. I was diagnosed with MCAS in 2017, but I previously took quercetin prior to 2015 for bladder issues. How do you all get your protein? Before I was diagnosed I developed an allergy to red meat (I've tried beef, pork, and lamb, so I assume it's the whole class now, and yes we tested for the tick-borne problem, it was neg. Anything that stimulates the immune system can cause a MCAS reaction. Not necessarily because of my mental state but because I think the MCAS is actually affecting my brain - pretty common in people like us. The two main methods used to treat MCAS include a self Mast Cell Activation Syndrome (MCAS) is a condition that manifests in a myriad of ways, with chronic pain being one of its most pronounced symptoms. It looks like you are looking for information on how common something is in individuals with EDS or related conditions. Down and up. One of the foremost MCAS doctors/researchers is apparently at a university not super far from us, but he only treats those already diagnosed with MCAS, so I didn't know I had mcas the past 5 years. Any non-professional tips or OTC recommendations to keep mast cells at bay and to avoid a flare up? I'm already on Singulair + Claritin daily but don't know if there's anything more I can do to further support my body with this infection. In 2020 I found a functional medicine GP (private, paid out of pocket). Or check it out in the app stores   but not sure whether to consider the timing during a flare or not. I've had drastic improvement, but I'm in the process of finding a good doctor to help me, so without testing I'm not For me, getting sweaty and increasing body heat flares me up so I stick to low impact exercises. My mcas was triggered by exposure to burn pit smoke when I was deployed to Iraq. I don’t know when this flare is going to end Tummy pain and upsets can be a part of pots, but more often that not that's as a comorbidity (a separate condition, but with links to pots). before i knew i had MCAS i would have high blood pressure, high heart rate, crippling anxiety that made me a completely different person (even at work), frequent panic attacks. Straight up soap strips your skin and can make it more susceptible to rashes and sensitivity. At that point it’s just spotting, but the flare hits me almost as bad as the initial period flare. Let me recommend, if you can handle it, having patch testing done. This is a huge problem for MCAS. It's not exactly the worst symptom in the world, but it can be confusing. Has anyone tries long term water fasting for MCAS ? Skip to main content. 15K subscribers in the MCAS community. I will usually get Vit C infusion every once in a while for my MCAS. I'm on medicaid and live in a smallish town. Crew Credits. The slightly more intense flare from the cromolyn lasted about 10 days. Showers and turning on the AC help mitigate symptoms. In the end, the body has the final say. It caused a terrible MCAS flare and antibiotic-resistant sinus infection. I hadn't ever heard of it, and definitely didn't know about triggers that would cause my mast cells to excessively release histamine (and other mediators). Hey y’all, for all my people who menstruate and it causes their symptoms to worsen, what do you do to help you out besides birth control? It is something I’m looking into but I have historically reacted Get the Reddit app Scan this QR code to download the app now. It got much hotter where I live exactly by the time when this started. MCAS is hell. I took both Nutrahacker (paid version), Genetic Preparing for Flares. Still working on finding my stabilizers but I do find that baking soda helps! So one thing I discovered is that one of the great things about having MCAS (finally diagnosed 3 weeks ago) is that not only does the disease suck, but all the medications I am on cause increased tooth decay because of dry mouth. After being in the sun I’ll get flu like symptoms, sores on my lips and extreme fatigue. My youngest had a flare of MCAS symptoms after covid and had to have epi when she got her xolair injection at the end of that month. With treatment, the aim is to reduce the severity of symptoms and improve the quality of life for those affected. On that, I am basically free from GI I’m about 1. I never got acne as a teenager or younger adult. Question is, though: can quercetin be taken continually, or should it be cycled? I ate some smoked beef snacks on the way to the doc + had an energy drink I usually avoid. Yeah it’s a tough tango when you’re trying to treat SIBO. I am dosing up from 2 mg of Ketotifen a day to 3 and an experiencing a huge flare. So I have had toothpain for weeks. Period causing flare up . I’m having an MCAS flare since mine was replaced (only had previous a year and totally calmed the MCAS and I lived normally!) so had a flare post virus and eating crap and had it replaced and my MCAS has gone up a notch due to the slight change in levels I guess. Open menu Open navigation Go to Reddit Home. lately I have been having constant flare ups, had a case of anaphylaxis, and it’s been over a month since i have been consistently able to sleep 3-4 hours a night, max. I’ve had MCAS for over a year with daily chronic hives, Skip to main content. All that being said however, I recommend getting it checked out anyways. With some meds they also have more then 1 generic form so you can research the inactive ingredients in Thank you for your submission. The definition of flare up in MCAS is when your symptoms increase due to exposure to mast cell triggers. I use this both in the shower and for hand washing. My daughter has MCAS too and she has done well with Avene’s acne products. The types of pain MCAS The challenge is that in the early days of MCAS treatment (to be clear, these early days could last 6-12 months potentially) and during reactive flares, people can feel From time to time, you may experience a flare-up of MCAS, where you’re unable to pinpoint a cause, sending you into panic mode. The Wim Hof method (the breathing specifically) was able to put me into a state of "remission" in regard to my MCAS. Get app Get the Reddit app Log In Log in to Reddit. Actually I got the flu a month ago and my mcas pretty much went away and I almost felt better with the flu than without, at times. I absolutely understand it but try to let yourself stay calm since stress tends to flare us up. And they can affect different organ systems. At present, sadly, there is no cure for MCAS. I had previously tried quercetin on its own (about 500mg daily) and liked it, but it was nothing groundbreaking, so I discontinued it. My disorder makes me have both severe and (prescribed) that has been doing the trip. My MCAS gives my doctors anxiety because it tries to take me out when viruses arrive but I can’t safely get anymore Covid vaccines. Dr Lawrence Afrin one of the leading mast cell experts estimates that up to 10% of people in psychiatric wards are experiencing mast cell events. My body is exhausted and the number and variety of MCAS symptoms keep growing everyday the stress and sleeplessness increase. There’s a reason I’m willing to shell out good chunks of money for it lol. Vitamin d requires good magnesium and K2 levels. But it comes back immediately after I eat something that has even mildly high histamine. You may see new symptoms. Hey everyone! MCAS is one of the hardest conditions I’ve ever had to live through and try and manage. I'm still very new to understanding my MCAS and I don't have a doctor managing it right now even though I got diagnosed. Pushing myself did more harm than good so if you have a dual diagnosis with fibromyalgia anywhere and are being to to push through and have mcas, don't listen! Background: I've been on MCAS targeted meds for 3+ yrs. You just don’t typically find them in “the sick section” of Reddit. H1 and H2 inhibitors twice a day. It can definitely worsen MCAS, especially if your levels of these bacteria were already depleted. Also my wife is excellent at getting her to calm her emotions when she has a flare up. My neuropathy was actually caused by vitamin deficiencies (B12 and folate) most likely due to the constant GI inflammation by mast cells. Posting as I’m recovering from post-operative pneumonia and already have MCAS and was curious if 1. I have asthma/allergies, fibromyalgia, kidney disease, liver disease, tachycardia, vision problems, gut issues , etc. I had an appt with an allergist and he took one look at me and said I didn’t have MCAS lol. Think everyone needs a little hope when it comes to this difficult condition! 14 votes, 23 comments. Diet has been pretty consistent other then a recent attempt to eliminate histamine and limit oxalates in Thank you for your submission. My Immunologist has not had many suggestions so far, and I feel lost. I was recently talking to someone on Reddit that was saying his number one regret was I’ve always suspected my Lyme disease to flare up but is there any reason Doxy would help MCAS flares? As I said before this all started when I binged a bunch of food on thanksgiving, primarily Dairy and Carbs. The cromolyn was OK but did not prevent a flare 6 mo later, so I switched to quercetin+DAO enzyme. One common comorbidity that this makes me think of is MCAS (mast cell activation syndrome) which causes allergy like symptoms, usually to a wide or varying range of triggers. Please note: Content on r/MCAS is not medical advice and should not be interpreted as It depends how serious the flare is. Here at the list of symptoms I had that have now diminished: Medical Management. MCAS, which flares hyper POTs. Yes! Quercetin removes a HUGE chunk of the burden, though reishi mushroom supplements help enormously as well. He sees a lot of MCAS patients, and identified that I had it. 8/10 pain bad, I couldn’t function. I find my mind sort of 'shrinks' during a flare so prepping like this can really help. Got covid in September 2020 and a week later, it was clear I had MCAS and am formally diagnosed and tryptase positive. Following advice provided by strangers on the internet may be harmful. On that, I am basically free from GI Chronic migraines. Since starting ketotifen it’s all calmed down and actually is now better than before it flared up - I’m able to do things at the gym I haven’t been able to do for years! Thank you for your submission. Both times I had those huge flares I ended up going to my doctors a lot but in the end Managing MCAS. i went to the ER several times for the high blood pressure/heart rate per my doctors orders when i called about it. It’s $10 in the States, but I’d pay $50 a bottle if I have to. Not so much hives though. Try to have a few options for the clean out, I explained my allergies since what I originally would've had to drink had lime flavoring which would've puajed me straight into anaphylaxis so they recommended I take multiple dulcolax pills instead which did the job. Sometimes the risk of weight gain from antihistamines might be worth it in the long term if it helps control your MCAS and helps lose MCAS induced weight gain. They got exposed to a small patch of poison ivy last week, and seem to be suffering a systemic skin reaction (along with some GI symptoms). Lynch created Stratagene test too. ). I've been in a flare for about a year now, but the intensity varies slightly. I searched the Internet for decades trying to find out why my allergy symptoms were worse right around that time with no luck. txhuiew ejmg ogsy pvnpuj boggsbdii blww mkp fbrjdwl mkfuz kkufa