I am 51 and my biggest issue right now is allergies that started probably 10 years ago that I cannot pin point the cause. I grew up with dealing with hay fever and eventually got shots that helped. It never fully went away but I learned to deal with the itchy eyes in the spring.
Fast forward to about 10 years ago living in Phoenix and I started waking up once on awhile with either a swollen lip, cheek, nose, and sometimes but rarely swollen tongue. It started happening maybe once or twice a week so I went to an allergy specialist in AZ and they took a bunch of blood and tested for all kinds of food allergies and other dust related allergies. They could not determine the cause and they told me to just take one 24 hour Alegra each day. I started doing that and it seemed to help at first but eventually I started to swell up at night, and sometimes during the say, around 1-2 times per week again. My face was very noticeably deformed and it was embarrassing to go to work and see people. When I wake up in the morning I immediately take a Benedryl and after 3-4 hours the swelling usually would go down.
I just felt frustrated that they couldn't figure out what was causing the swelling. Some days I would eat nothing different than the previous few days and I would still swell up.
Ended up moving to Oregon about 4 years ago and decided to go to an allergist here. They took out so much blood I literally passed out. The doctor told me the same thing that they couldn't determine why this was happening. Her solution was to increase the Allegra 24 from once at night to twice a day. Splendid. Even with taking the Allegra I probably have facial swelling about 5-7 days a month. Super frustrated and posting this as perhaps one of you has dealt with this and got some clarity.
Not a typical complaint of aging, and sounds more severe than run-of-the-mill allergies. Did they diagnose you with idiopathic angioedema?
There’s a work up involving several blood tests beyond allergen panels (complement levels, C1 esterase inhibitor, serum protein electrophoresis, blood counts with differential, autoimmune tests like ANA) and exclusion of environmental precipitants (ACE inhibitor drugs for high blood pressure and NSAIDS in particular).
I’d be shocked if two allergists haven’t reviewed all these things, and everything’s negative. Sometimes you just need to treat the symptoms. Antihistamines are first line, but if those fail, there are other esoteric drugs like omalizumab are sometimes used. If you haven’t already, I’d see an allergy-immunologist at an academic center.