Facial swelling/edema - persistent. What could it be?

Posted by kayyomars @kayyomars, 20 hours ago

Hey everyone, I'm a 21yo male and have been experiencing facial swelling/edema for at least 5 years (since 16yo). It's been getting worse since the spring and has been genuinely distressing. Complete puffing up of jaw, nose, cheeks, affects one eye.

I have a diagnosed developmental stutter, chronic migraines, mixed rhinitis, asthma, and hypermobility spectrum disorder.

I'm on Acarizax dust mite immunotherapy, Aimovig 140mg, an anti-histamine (bilastine), two psychotropic meds (duloxetine, quetiapine), montelukast, Relvar inhaler, and Ryaltris nasal spray.

My allergist couldn't find an allergic or sinus-related cause for it. Rheumatologist dismissed it after my previous mental health issues came up. Neurologist thought the swelling would be solved with Aimovig (as it is a CGRP receptor antagonist, and CGRP is a vasodilator), but now he's stumped too.

Does anyone have any similar experiences or any idea what to do here? I've been recommended to go back to square one and see my PCP (or GP as we call it here) - but he's generally stumped when it comes to my health problems too. I feel like there's got to be other options, some other specialist I can see.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hello @kayyomars, Welcome to Connect. While you wait for members who may have experience to respond, you might want to scan through the many discussions and comments that mention facial swelling to see if anything sounds similar. Here's a search of Connect with a list of discussions and comments by members on facial swelling - https://connect.mayoclinic.org/search/?search=Facial+swelling++.

You mentioned the swelling only affects one eye. Does the swelling affect both sides of your face?

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I have swelling in both jaw areas and both sides near the jaw.

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