Dealing with Chronic Pain and Allergies: My EDS/POTS/MCAS Journey

Hi everyone! I've been dealing with pain and weird allergies for most of my life, but very recently discovered I have the EDS/POTS/MCAS trifecta. Basically just dealing with lots of pain, dizziness, and too many allergies! I'm hoping to find a community and maybe some advice. 😊

Do people with MCAS get random flare ups during spring?

Do people with MCAS get random flare ups during spring? I've had a sleepless night with crazy itching but I haven't eaten anything particularly triggering and I haven't had hot showers bath/scrubbed with loofah which are usually the things that can make me really bad. it's so out of the blue and the only thing I can think of is that it may be seasonal! I live in Scotland and we literally have snow outside though so it's odd! my ears, eyes and all over my body ughhh. I suffer with the ears all year round but my whole body like this is unusual

Experiencing Dizziness for 24 Hours - Seeking Advice

I've been dizzy for 24 hours now. when I walk it looks like I just got done spinning around for 20 min. I have had bppv before but this feels different. I had what. calling a MCAS flare yesterday. Just wondering if anyone else has experienced this and what they did about it?

Need help with scalp rashes

Anyone have recommendations on what do about rashes on your scalp?

Discovering the Root Cause of Chronic Illness

just wanted to put this out there bc not many ppl know this. if you have any of these illnesses and are looking for a root cause, I recommend looking into chronic inflammatory response syndrome (CIRS). learning about it saved my life and it’s a very common and treatable chronic illness that unfortunately goes under the radar a lot due to a lack of awareness. so if you’re looking for a root cause, i think it might help to learn about. lmk if you have any questions!

Uncontrollable Facial Twitching and Swollen Tongue

Okay...so...I get these episodes where my jaw starts twisting, my tongue swells, and my lower face twitches uncontrollably and it seems to be worse with stress. The only thing that's ever stopped it is taking up to 8 benadryl! I'm not sure if it's related to my MCAS or not though. Anyone else have anything similar??

Managing MCAS Symptoms in the Heat

Hey all. Thanks so much to everyone... I'm learning so much about my MCAS that my Dr never really explained!! You're all a true blessing!! I don't know how the heat is where you are but here in Tennessee it's super hot out and I'm finding that any time I go out in the heat my nausea ramps up tremendously. Anyone else experience this? It's super annoying especially now since the air conditioning went out in my van. How do you manage the heat and does it cause you symptom spikes too???

Memory problems with MCAS?

I'm wondering if anyone else with MCAS has memory problems?? I know my fibro causes cloudy thinking but I'm wondering if the MCAS makes it worse or maybe has it's own memory issues? It's just not normal for every day words...such as "table" or "postal worker"....to completely slip my mind...is it?

Struggling with Mast Cell Activation Syndrome

Hi. I've only recently been diagnosed with mast cell activation syndrome and I'm wondering what everyone struggles with most. I get random fevers and, of course, anaphylaxis. The meds help with the anaphylaxis but I can't get the fevers to stop happening. Anyone else struggling with this?

Newly diagnosed with MCAS, seeking advice on treatments

I finally had my appt with the MCAS specialist last week, and I have no idea where to start to figure out what treatments work for me. It seems too daunting, especially with the overwhelming fatigue and brain fog. Any advice for someone newly diagnosed?

Cromolyn Burnout: How to Keep Up with Medication?

Anyone else get burnt out taking Cromolyn 4x a day? Sometimes I try to take a break but then I start to get itchy and get a rash anytime things get a tiny bit stressful. How do you have the stamina to keep it up? Sometimes it feels endless.

Connecting with Others with MCAS, EDS, and POTS

Hello lovely people!! Hoping to connect with others who have the terrible trifecta of MCAS, (hypermobile) EDS, and (not yet diagnosed) POTS ✨ Let’s help heal each other 🙏

Dealing with Allergic Arthritis from Xolair Shots

I have Mast Cell Activation Syndrome and have been getting Xolair for a year. I now have allergic arthritis from the shot. Has anyone experienced this and have ways they dealt with pain in every joint? I am allergic to most medicine so I need alternatives to medication.

How many antihistamines are too many?

How many antihistamines do you guys take a day? What kind, mgs, and how often? I don’t know if I’m taking too many.

Best route for MCAS diagnosis?

Hi I was just Diagnosed with MCAS....trying to figure out the best route. Doctor or functional medicine Doctor

Share Your Medical Treatment Experience

which treatments are you taking

Best doctors for MCAS treatment?

What doctors/specialties are best to see for treatment and help, especially given the lack of understanding about MCAS (and/or refusal to acknowledge that it exists)? I'm running out of doctors I can see in my area, since so few know about my multitude of conditions.

Need advice for blocking mast cells in Mast Cell Activation Syndrome

hi i have mast cell activation syndrome. any idea of things to do to block these mast cells,.

Looking for MCAS Support

Hi, I look forward to connecting with other MCAS patients. Would love to support each other, help each other learn, and be a friend.

Looking for Herbal Remedies and Alternative Therapies for MCAS

hi! i’m grace, i’m 19 and currently in school and working while being disabled. I deal with MCAS, congenital hydrocephalus, hemochromatosis, and migraine. MCAS is something i have had most of my life but was only diagnosed recently. What herbal remedies and alternative therapies have worked for you best?