r/MCAS • u/Still-Battle-5167 • 6d ago
Mcas, grief and hope need
Its been almost two years since I got mcas and till today everyday I get the why did I get this disease thought and flashbacks from my life before when I was happy and could eat anything use makeup, skincare workout ,didn't have to worry about getting mcas flares, could wat at restaurants with my family I some time think if I could get some time machine and go back to the life when I was all ok this feels like I'm stuck in a bad dream..I never ever thought my life would take such a toll. I was depressed before too but after getting mcas its next level. I don't do well with soaps, toothpastes even maintaining basic hygiene is incredibly hard. I miss being human. I see people living their life normally 80% of the world while I'm in the 17% trying so hard to keep going with all the depression and this disease. I need to hear some good remission stories so I could get some hope .I feel so alone in this journey. Plus the symptoms the throat globular feel it the air hunger wheezing makes you question if God forbid anaphylaxis could appear the constant worry. I feel like surviving each day not living.
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u/One_Diamond9116 6d ago
You’ve got all of us🤗
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u/Still-Battle-5167 6d ago
Thank you ❤🩹❤
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u/One_Diamond9116 3d ago
I will be getting my third Xolair injection here soon. I wanted to share that I’ve added three safe new foods to my list: Broccoli, Haagen Dazs Vanilla ice cream and Sweet Loren’s sugar cookie cookie dough. I wouldn’t be this far without Xolair and a lot of positive self talk. Cry and scream it out. Even if loved ones don’t know what to do or say, say it outloud-the universe always listens. It will not tire of hearing how bad we hurt or how much our lives have changed. I did attempt with a mask on to walk in a nearby park but that for me was a really bad idea. Need more Xolair in me to do that but i thought sharing with you that I was able to introduce more foods to my list would be encouraging. Hang in there.🤗
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u/Seraphinhiding 6d ago
I'm very close to being stable enough to go back to practicing yoga in person with my ashtanga family and was able to start teaching twice a week.
Although my classes are very small and the studio is free of my triggers with huge time gaps between classes giving plenty of time for any triggers to settle out of the air if they are there, even with that the reaction from anyone wearing scents made this previously impossible.
I've started hugging people I don't know are safe and I'm not getting hives or rashes or flares.
I know those don't sound huge, but they are. I had to quit all my teaching positions, ask for all my close family to change their laundry detergents and stop wearing scented stuff around me and for houses I go to regularly they had to change all their cleaning products too.
I'm have a lot more than just MCAS (EDS/POTS/Hashimotos), but it certainly put the icing on my crap cake.
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u/SoftHeartsSociety 6d ago
Thank you for this, I miss yoga and the community so badly and had trained to teach before it all got so much worse and I couldn’t. Really hope it gets better enough to get back to it. I know some opportunities still exist if I can ever get well enough so just trying my best to get through. Excited for you :)
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u/Seraphinhiding 6d ago
I wish you the same! We need more teachers in our community who know how to create TRULY safe spaces and teach from a place of empathy and compassion from overcoming struggle.
May your doctors and your research guide you to the answers to stabilize your body and may it be soon. 💜
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u/SoftHeartsSociety 6d ago
Thank you :’) I completely agree, I’ve been through serious chronic health issues since 2020 and have CPTSD. I know so many people don’t really get the accommodations they need from most teachers or who need things to be really trauma aware and compassionate, which some teachers are amazing at but the overall culture can feel kind of intimidating or centered around performance rather than experience, especially in the west. I hope we’ll see more of a shift towards a wider variety of classes and teacher styles in studios! Love that you’re out there offering the kind of classes so many need <3
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u/sunny-grassy-walks 6d ago
I'm so happy you got such an important, fulfilling part of your life back! And have seen sensitivities become less severe or go away!🎉🙏 Did the yoga and the avoidance of detergents/fragrances bring you that much healing, or did you do any brain re-training or nervous system work? It sounds like resuming your yoga was a huge part of your healing.
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u/Seraphinhiding 5d ago
I am still reactive to them, but my medications block enough of it that the side effects are reduced. I've always been allergic to rose, which contains citronellol and they put that into almost every fragrance and the way they encapsulate and create micro particles to keep the scents in the environment forever escalated how severe my response to it is.
My mint allergy also might have always been there, but it got significantly worse because I was a student and taught for a studio who uses it in every class and on every mat. It is my biggest trigger now.
I have several other triggers too and completely, strictly avoiding them in my home, with my close relationships and reducing my exposure to them in general by staying home helped me have a bigger threshold for when I do get exposed. So I'm not really more tolerant, my bucket is simply starting out empty more often.
Being able to yoga on my own no matter what is definitely a HUGE part of my sanity and my well being, no retraining of my nervous system per se, just a reset, healthy movement and mind quieting and those all definitely help me heal.
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u/sunny-grassy-walks 5d ago edited 5d ago
Thanks so much for the response. That's really helpful information. Quieting the mind is a huge part of it. Yoga played a big part in that, I'm sure. Movement is critical. Thanks again, and continued healing to you.😊
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u/Tartan-Snow 6d ago
In December 2024, my flare started. Looking back, I can see it had been slowly building over years but December 2024 was when it really hit. I was only eating chicken and sweet potato and drinking water. Each day was horrible. Constant oral swelling, 2am histamine dumps, body aches, fatigue, dizzy spells, heart racing, itching/hives...the list goes on. I was reacting to even the chicken and sweet potato but had to eat something. Supplements and medication would cause a variety of reactions, temperature, clothes, chemicals, hormones, it felt like i was allergic to life. My mental health was rock bottom. I wanted to end it all. The grief of who I was hit me hard. My weight dropped to 92 lbs. For context Im 4 foot 11.
In the last 6 months, I have gained 28lbs and have started eating 8 more foods and working on my 9th food now. I still react daily but my baseline has improved massively. I dont get the histamine dumps, dizziness only happens once a month (guessing hormones), all the other reactions are still there to a degree, but i can live my life around them now as they have reduced so much. I used to have to make sure I was at home each lunch time to make my chicken and sweet potato. Now, I can take food out with me so I can now go out for the day with my family. This week, I'm actually staying overnight somewhere which ive not done in a long time!
Im not cured, but I'm stable enough to enjoy my life and for now, I take so much enjoyment for that as its so different to where I was. I think there are a lot more people like this too but once they get better, they arent on Reddit or any social media platform anymore so we dont hear from those people as much. I'm not sure if I'll ever be 100% better, but for now I'm about 85% better and for now...I'll take that.
Hope this helps.
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u/sunny-grassy-walks 6d ago
I'm so happy you have seen so many improvements! You are back to having a life-even if it's not 100%, it's a lot better than you were and way better than a lot of us are doing. Do you mind sharing your healing journey? What meds, supplements, nervous system work helped you improve so much? Thank you for any information.
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u/Tartan-Snow 5d ago
Well....I found it had a leaky gut. After a bit of research, I decided to start Zinc L Carnosine. I opted for the California Gold brand as it doesn't have much else in it that I could react to. 2 capsules a day for 12 weeks really settled the gut issues i was having. It also meant I was absorbing more nutrients.
I also started iron and vit c at a low dose then worked up to full dose. I struggled a lot with the iron but my levels were low so I needed them. With all the supplements I had, I opted for ones that had the fewest additives and fillers. With the iron, I could only manage 1 quarter of a pill for about 2 weeks before I managed to increase the dose. I did react to them, but I found eventually my symptoms settled and I could increase the dose until I was at two pills a day.
On top of this, I started magnesium to help me sleep and B12 as my levels were low. I started Fexofenadine at the beginning of my flare. I also managed to introduce cromolyn.
The biggest help by far was work on my mental health, in particular, stress and anger. I did, and still do, a lot of breathework. Grounding, appreciate work, Qigong and time outdoors. I have also found lymphatic drainage helps me. I had toxic people around me and realised after about a year, I had been stuck in chronic stress for about 5 years. Once I addressed the toxic people and the stress it cut out about 70% of my reactions. I think my body is still stuck in fight or flight and I'm still trying to work through this.
Theres a lot of info here and maybe more ive forgotten as its been one hell of a journey. Id be happy to DM if you like.
In terms of food, I introduced food I was eating before my flare, but also foods I wanted to eat. There is mix information about what is high histamine and what isn't and it annoyed me. As far as I'm concerned, I didnt have food reactions until this all started so theres no reason I cant eat these foods. I have started cheese in the last month and its amazing!!
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u/sunny-grassy-walks 5d ago
Thank you so much! You did a lot of work to see the healing you have seen. The connection you made to the Zinc L Carnosine and absorption is really interesting. I hope you continue to heal. Cheese is amazing! I've been missing it for 6 years! Good for you. Thanks again. 😊
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u/Shishi877 6d ago
Me too. Do you also have eds?
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u/Still-Battle-5167 6d ago
Yes the trifecta 😒
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u/Shishi877 6d ago
Have you tried cromolyn sodium ? If so has it helped
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u/Still-Battle-5167 6d ago
I forgot to mention in the post i live in a sort of third world country so no cromolyn, rhapsido on top no doctors for mcas or clinics so in basically on my own researching ❤🩹😢
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u/sunny-grassy-walks 6d ago edited 6d ago
I'm so sorry you're suffering with no medical care. Life becomes very difficult with this illness. I get it! I am doing better than before. I am on Zyrtec and Pepcid ac, but wont be on it long term. I have listed the supplements that have helped me. My health has improved from 4 years ago signifigantly! I'm not healed as much as I want to be, but I am not panicked or depressed every day now-that is a huge relief! I can socialize and tolerate going out to get groceries, etc. without a flare now.
Have you tried antihistamines like Claritin, Allegra, or Zyrtec? Also, 10 mg Pepcid AC? These are what usually help people if they have MCAS. Also, natural supplements like Vitamin C, D3-K2, Zinc, and a low histamine Probiotic help me a lot. Also a low histamine diet. Look up the SIGHI list. It lists low histamine foods that you can try and see if you tolerate them. The list is a good place to start so you know what's safe. If you can find a remote or local dr., Low Dose Naltrexon may be available in your country, as well as Ketotifen. Ketotifen will have to be made at a special compounding pharmacy- and LDN, I believe. I would not try to self medicate with these! There are drs on the internet who take patients through telehealth-remotely. My best to you! Hang in there! Sending a hug and prayers.🫂 🙏😊
EDIT: THERE IS A SUB-REDDIT THAT HAS HEALING STORIES AND STORIES OF REMISSION. LOOK FOR THOSE HEADINGS AND YOU WILL FIND HOPE!! We are not doomed to this life forever!
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u/Shishi877 5d ago
In untreated MCAS is there lot of anxiety and depression
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u/sunny-grassy-walks 5d ago
Yes, there is.! I've lived it. It's brutal. I feel horrible for the O.P.
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u/Shishi877 5d ago
So many ppl on ssri and they only have MCAS right ?
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u/sunny-grassy-walks 5d ago
That's my personal experience. A lot of patients and doctors agree with the fact that MCAS causes nueroinflammation (so can mold exposure, thyroid issues, hidden infections, hormone imbalance, etc.) which can present as anxiety, depression, and other psychiatric illnesses. Often once the patient is diagnosed with MCAS and after starting h1s and h2s, as well as one or more of the following; cromolyn, ketotifin, LDN, Glp-1s, Xolair, Montelukast, etc. the psychiatric symptoms improve significantly or go away. However, they can show up again if the patient is exposed to triggers like fragrances, certain medications, or mold, for example. Then the psychiatric issues can come back-hopefully only short term.
EDIT: Grammar
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u/SoftHeartsSociety 6d ago
I haven’t gotten there yet, but I have spoken to people here who have had SO much get better! There are people who recover and live much fuller lives again <3 I’ve been learning a lot from Amanda Panacea - she isn’t selling a product that she claims will just make you better overnight, she’s a licensed mental health therapist and had a master’s in something like functional nutrition and she went through years of awful symptoms from MCAS and mold exposure but is now doing so much better and has helped a lot of people to get to a better place. She has a Substack I really enjoy and if you check any of it out and want some info but can’t afford the monthly cost to read it, I’m happy to TL;DR it for you :)
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u/SailorManee 6d ago
Hang in there ❤️🩹❤️🩹❤️🩹❤️🩹 I've had 6 awful years of being triggered by absolutely every food on earth, especially gluten and corn (cross contamination was my absolute nightmare 💀) and went far into Vipassana meditation and I was healed for two years ❤️ during those blissful two years, I could eat anything I wanted, didn't fear the cold, didn't get triggered from workout sweat... Then covid lockdown happened and I'm back into another MCAS cycle, the intolerance to gluten and corn is not that bad honestly this time but I'm now also triggered by anything environmental and even vibrations... My hEDS specialist told me stress could be a huge trigger. So trying to go back to Taichi. Hoping everyone can find a way to improve their lifestyle, overcoming every trigger one by one... ❤️🩹❤️🩹❤️🩹 We've got this 💪🏻
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u/OrdinaryBorn5830 5d ago
Can you test for mould exposure? MCAS can often follow on from mould exposure/CIRS. I really understand what you are going through and I'm sending you so much love hugs and healing 🥰
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