197d
0
My doctor put me on ketotifen for my MCAS. I ended up having a rash that appeared on my hand that only went away when I ran out of the med. I tried taking it when it was refilled and again rash on hand. Anyone else have this problem? What mast cell stabilizers work for you?
542d
9
Allergy
Postural Orthostatic Tachycardia Syndrome (POTS)
Ehlers-Danlos Syndrome (EDS)
Mast cell activation syndrome
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. 😊
547d
0
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
607d
0
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?
752d
3
Anyone have recommendations on what do about rashes on your scalp?
753d
2
Postural Orthostatic Tachycardia Syndrome (POTS)
Fibromyalgia (FM)
Mast cell activation syndrome
Myalgic Encephalomyelitis
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!
809d
0
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??
814d
1
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???
818d
0
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?
819d
0
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?
The significance of online communities lies in the emotional support and understanding they provide, empowering patients to express their concerns, fears, and triumphs without fear of judgment. Such platforms foster a sense of belonging and camaraderie, helping patients navigate the complexities of their conditions and treatment options.
Bupropion
night sweats
paranoid
Valium
sertraline
palpitations
Anxiety (Including GAD)
Depression
palpitations
Depression
Valium
Bupropion
What is it?
Mast cell activation syndrome (MCAS) is a condition in which mast cells, which are a part of the immune system, release too much of the substance inside it.
Learn moreAlike Wisdom
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
767 Alikes with Mast cell activation syndrome
Learn from others
who are experiencing
Mast cell activation syndrome.
4.7 Ratings