Facial Swelling - no diagnosis

I have had this for a year, but it came on after covid shots. I learned that I had an intolerance for histamine anywhere in my diet or any topicals that might cause the inflammation. Mast Cell over-reactions are more common than we realize. I went on a low to no, histamine diet……every time I veer from it the inflammation creeps back. I only have it on my face and it turns into little pops on my skin….the mast cell is angry!! But the entire face swells. It was and is diet controlled. It took a lot of study and time to figure out my foods and drinks…..and I’m not complaining as I have my little food group and thats it. The inflammation can make me feel sooooo tired and lethargic as well…..and depressed. So you might deep dive study on this. Beth O’Hara and Becky Campbell have the two most helpful sites on this that I have found, esp for women. I take Dr Campbell’s vitamin line call Optimal Reset to reset my histamine levels and I’ve learned to stay on it, in my case. There is a LOT to learn but so worth it. I got my face back!! Good Luck!

More like tenderness because it's swelling so much

Is there pain associated with this swelling?

I have the same thing going on right now. No one can figure it out and it's been 6 months and the swelling is now spreading to the other side of my face. I've had a ton of. Antibiotics , steroids were the only thing that brought my face back to normal but then the inflammation would come back a few days later. My family has no history of Lupus or autoimmune diseases. All my labs and imaging come back clear ..no mass no fluid no abscess. Help! What did you find out?

Hi. As I read what you wrote there was one constant thought! Go to Mayo Clinic…from all I have heard they are the best and..you have all the test already. You have really been through it and I know you’re frustrated..I know I would be. Good luck.

@lily2013 About your facial swelling. I have facial swelling in some areas, and shrinkage in others. Starting at the hairline over my forehead. My skin is sagging down all over my face, and piling up in specific spots. Both sides of my nose bridge. Over my cheek bones below my eyes. On my lower lip. Below my jawbone, over the areas on both ends of the cut where Mayo disabused me of my cancerous thyroid. Inside my mouth, both behind and in front of my top and bottom teeth. ( I believe these lesions here are called "Torres del Muir" or "Muir-Torres". They cover my body to my crotch from the top of my head, front and back. They are said to be cancerous evidence of my Myeloma-Amyloidosis-Gelsolin with Walker-Warburg." My swelling is also shrinking my esophagus, making it difficult to eat any non-liquid food. The roof of my mouth is sagging, and my teeth hurt constantly, but there are no cavities or other anomalies the dentist can find. I also have LGMDr23, but I am not convinced this is related to the swelling. You also need a top-notch examination of your eyes. I suspect you will find retinal disfigurement from the swelling. My first guess is that you have Gelsolin, perhaps with Walker-Warburg. I might be also related to either encephally and/or lymphoma. But in any case, I am convinced it is protein-related. A whole-genome analysis is warranted. oldkarl

Oh geez. My rough ride with facial swelling has been going on for almost 4 yrs. And no one has a clue why. I have kept a photo journal of my face along the way. Sometimes, it's totally freakish. But then it can return to normal. At times, close friends and family have not recognized me. It's better over past year or so, but my eyes do all kinds of swelling apart from the face...turn into "raccoon eyes", bleeding in eyes, absolutely crazy stuff. I wish someone could help! I've had a myriad of tests...all negative. But other health issues took higher priority in past 2 yrs, so one thing at a time. It's very embarrassing. I have dozens of photos and my face has taken so many shapes that I just began making it into a personal freak show. No one else has seen it!

You are so welcome…..any time! You are clearly brave and determined so you’ll figure it out!!!….God Bless!!

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.

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!