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Facial Swelling - no diagnosis

Autoimmune Diseases | Last Active: Apr 20, 2023 | Replies (158)

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@terrirussell

I would say you have Mast Cell Activation just like I do. All the things you have mentioned I’ve gone through over the course of a year. My face was so swollen and with every wrong thing I ate or put on it, it flared up to pop these bizarre bumps on my face. That I broke open I might add and all of it was like open skin that the skin would not reunite over the the hole. It was all about histamine and histamine overload. Regular medical people are without skill sets for this. You have to do all the research but I would start with Dr. Beth O’Hara’ssite and Dr. Amy Campbell. I have a lot of other sites and a terrific guy in BC Canada too…..but these two take you through the nightmare and make sense of it all!…..I never relied on a dr after all the blank looks. I feel like I have a degree in this now. But it was my face that took the hit…..like you. Histamine Intolerance can present differently in everyone….but it was rarer on the face . But my background is Ehlers Danlos Syndrome ….some say double jointedness, which is accurate but one of only many things that are affected by having a collagen deficiency ….but 40% of us have MCAS and suffer from it. However……..diet is the answer….but YOUR diet is your answer. They will get you started and show you how to strip your food life and start with one thing at a time but it’s your journey . They have strict food lists to eat and avoid. A lot of it applied to me and a lot did not. I am also reactive to gluten, salicylates, lectins, sugar and anything that makes sugar, Histamines, and Oxalates….. but I have my food list now and my migraines, sinus infections, swelling, lesions , brain fog, depression from it all, lethargy , are all gone and stay gone as long as I eat from my own list faithfully. Eventually we all try a new thing….sometimes it’s a whoops, like a face cream, and I have 12 pinpoint pops on my face…..and all the symptoms came back too which is the really bad part, and they last a good 4 days after I reinstate my strict list and add some things that dry up the lesions. It still takes 4 days.And the thing thats really odd about my recovery is that because I am O+ blood type,, I actually heal up fast with going on the Carnivore Diet must to the chagrin of my GP ….don’t care…….BBBE butter bacon beef and eggs. And water. Straight up …….any time I’m hungry…….my Instant Pot saved me . Within 4 days all signs are gone and by 7 days I can reintroduce broccoli and lettuce and other foods and fruits…..very few, but have my list. I also have my Optimal Reset supplements…..from Dr. Campbell. They indeed keep my stable as I resurface.
A common co-morbid condition w EDS and MCAS actually. , is GAD Generalized Anxiety Disorder. Just highly sensory people. So I take Effexor xr for this and I bring it up bec it is a real and proven factor braided in w EDS and Mast Cell. You might want to check out the signs for that on line. I also have flushing or hives easily ……or did , before the diet and the Effexor. I take Tenormin for a fast pulse. I am in balance. Thats what you are striving for. But realize the anxiety is genetic….GAD is genetic…..and undiagnosed or untreated, can morph into depression, but really it’s core issue is anxiety. I’ve seen way too many folks get on an antidepressant when they were really just anxious. All of this really surfaced well with the intense study of Robin Williams, the actor and a tragedy of wrong meds. If you find yourself realizing you may have Mast Cell Activation Syndrome , there is a world of help out there for you! Millions of us! God Bless!

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Replies to "I would say you have Mast Cell Activation just like I do. All the things you..."

Thank you for sharing the information and what you are going through. I will look into everything. It might be my teeth causing the swelling. Doctor has no answers. I hope you stick to your plan and remain healthy.