An intro guide to Mast Cell Activation Syndrome and how it has fundamentally changed my life. Living under the constant threat of anaphylaxis is hard - but there are ways to make it easier.
Thank you, really informative, didn't know about the different presentations of anaphylaxis. Interesting as my daughter and I are both having more reactions to things since COVID, mostly runny eyes and nose and sometimes throat, so this is worth knowing! So sorry you're having to deal with this. I totally empathise with a smaller life, mine is more fatigue and pain related. X
Thanks for this great introduction to MCAS! I rarely come across others who have this more atypical presentation. One of the earliest descriptions I saw of it was that we have “leaky” mast cells. We tend to have constant low level symptoms and when we trigger reactions they tend to take hours to days to show up. Trouble tends to sneak up on us, versus happening in dramatic stereotypical anaphylactic shock events. It doesn’t mean that we aren’t really sick. It just means that the journey to our reaction looks different.
My latest stupid trigger is the “rumble strips” on the Interstate Highways.There is LOTS of road construction and the lanes are being shifted so that traffic is driving directly on the “rumble strips”. When other cars drive on them and I can hear the sound I start having migraine, vision issues and pain in my ears and jaw. If the car I am in has to drive on them, I have excruciating bone pain and if we have to stay on the rumble strips long enough, I lose the ability to respond/speak/voluntarily move. It definitely makes leaving the house awkward.
Thank you for covering this important topic. My MCAS is not as severe as yours, but it's been a wicked challenge. It was a great day when I discovered an H2 blocker combined with antihistamine could resolve some of the worst reactions.
I am not a fan of mast cells...
Looking forward to better understanding of how to prevent all reactions.
I had no Idea you could be in anaphylaxis and not have throat involvement - thank you for sharing
Bob
You’re so welcome - understanding anaphylaxis is critical to keeping yourself safe with MCAS!
Thank you, really informative, didn't know about the different presentations of anaphylaxis. Interesting as my daughter and I are both having more reactions to things since COVID, mostly runny eyes and nose and sometimes throat, so this is worth knowing! So sorry you're having to deal with this. I totally empathise with a smaller life, mine is more fatigue and pain related. X
Thanks for this great introduction to MCAS! I rarely come across others who have this more atypical presentation. One of the earliest descriptions I saw of it was that we have “leaky” mast cells. We tend to have constant low level symptoms and when we trigger reactions they tend to take hours to days to show up. Trouble tends to sneak up on us, versus happening in dramatic stereotypical anaphylactic shock events. It doesn’t mean that we aren’t really sick. It just means that the journey to our reaction looks different.
My latest stupid trigger is the “rumble strips” on the Interstate Highways.There is LOTS of road construction and the lanes are being shifted so that traffic is driving directly on the “rumble strips”. When other cars drive on them and I can hear the sound I start having migraine, vision issues and pain in my ears and jaw. If the car I am in has to drive on them, I have excruciating bone pain and if we have to stay on the rumble strips long enough, I lose the ability to respond/speak/voluntarily move. It definitely makes leaving the house awkward.
Thank you for covering this important topic. My MCAS is not as severe as yours, but it's been a wicked challenge. It was a great day when I discovered an H2 blocker combined with antihistamine could resolve some of the worst reactions.
I am not a fan of mast cells...
Looking forward to better understanding of how to prevent all reactions.